journal of ophthalmology research reviews & reports

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Title proper: Journal of ophthalmology research reviews & reports.

Country: United Kingdom

Medium: Online

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Current Ophthalmology Reports

Current Ophthalmology Reports is a source for expert review articles on the most significant recent developments in the field of ophthalmology, providing clear, insightful, balanced contributions to benefit those who diagnose, treat, manage, and prevent ocular conditions and diseases.

International authorities in ophthalmology serve as Section Editors, choosing key topics for which leading experts contribute comprehensive review articles that emphasize new developments and recently published papers of major importance, highlighted by annotated reference lists.

Coverage includes such topics as age-related macular degeneration, diabetic retinopathy, dry eye syndrome, glaucoma, pediatric ophthalmology, ocular infections, refractive surgery and stem cell therapy.

• Victor Perez

Latest issue

Volume 12, Issue 3

Latest articles

Approaches to restoring lacrimal gland function: from stem cells to tissue engineering.

• Alexander C. Lieu
• Marissa K. Shoji
• Catherine Y. Liu

Update on Factors Contributing to Traumatic Glaucoma Following Ocular Contusion and Globe Perforation

• Shakeel Shareef
• Abdelrahman M. Elhusseiny

Updates on Pediatric Glaucoma: Medical and Surgical Interventions

• James Garcia
• Harsh Madaik
• Lilian Nguyen

Traumatic Optic Neuropathy: Challenges and Opportunities in Developing Neuroprotective and Neuroregenerative Therapies

• Nicole Y. Tsai
• Ryan A. Gallo
• Benyam Kinde

Incidence and Mitigation of Corneal Pseudomicrocysts Induced by Antibody–Drug Conjugates (ADCs)

• Ethan S. Lindgren
• Rongshan Yan
• Neel D. Pasricha

Journal updates

Covid-19 and impact on peer review.

As a result of the significant disruption that is being caused by the COVID-19 pandemic we are very aware that many researchers will have difficulty in meeting the timelines associated with our peer review process during normal times.  Please do let us know if you need additional time. Our systems will continue to remind you of the original timelines but we intend to be highly flexible at this time.

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American Academy of Ophthalmology’s Research Journals Ranked Highest in the Field

2022 impact factors show that the Ophthalmology family of journals continues to publish important and highly cited studies

SAN FRANCISCO, Calif. —  The recently released 2022 impact factor scores reveal that the research journals Ophthalmology , Ophthalmology Retina and Ophthalmology Glaucoma   are ranked highly in the field. The impact factor measures the importance of a journal by calculating the average number of times selected articles are cited within the two previous years.

Ophthalmology received a score of 13.7, making it the most highly rated journal in the field that publishes original research. Ophthalmology Retina received a score of 4.5 and Ophthalmology Glaucoma scored a 2.9, making both the leading journal in its respective subspecialty. This is the first year Ophthalmology Retina and Ophthalmology Glaucoma received impact factors.

“We are delighted with the strong initial impact factors for Ophthalmology Retina and Ophthalmology Glaucoma , as well as the continued high impact factor for Ophthalmology ,” said Russell Van Gelder, MD, PhD, editor-in-chief of Ophthalmology . “The success of these journals has allowed Ophthalmology to continue to publish the very highest impact work. While impact factors are an imperfect proxy for the true impact of our published papers on our patients' lives, they do demonstrate that our papers are being widely read and cited. The Ophthalmology family of journals are a great resource for Academy members and our specialty in general.”

Ophthalmology Science , the Academy’s newest journal, achieved PubMed/MEDLINE indexing last year. We anticipate its inaugural impact factor in June 2024. 

Journal impact factor scores are published annually by Clarivate Analytics.

About the American Academy of Ophthalmology

The American Academy of Ophthalmology is the world’s largest association of eye physicians and surgeons. A global community of 32,000 medical doctors, we protect sight and empower lives by setting the standards for ophthalmic education and advocating for our patients and the public. We innovate to advance our profession and to ensure the delivery of the highest-quality eye care. Our EyeSmart ® program provides the public with the most trusted information about eye health. For more information, visit aao.org .

About  Ophthalmology Ophthalmology ® , the official journal of the American Academy of Ophthalmology, publishes original, peer-reviewed, clinically applicable research. The  Ophthalmology  franchise, owned by the Academy and published by Elsevier, also includes subspecialty publications, Ophthalmology ®  Retina and Ophthalmology® Glaucoma ,  and open access journal,  Ophthalmology® Science . For more information, visit www.aaojournal.org .

All content on the Academy’s website is protected by copyright law and the  Terms of Service . This content may not be reproduced, copied, or put into any artificial intelligence program, including large language and generative AI models, without  permission from the Academy.

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• Ophthalmology

Explore the latest in ophthalmology, including recent advances in diagnosis and management of glaucoma, lens and retinal disorders, and more.

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Article type.

This cross-sectional study used 20-year follow-up data from the Ocular Hypertension Treatment Study to determine the impact, if any, of preperimetric glaucoma and early glaucomatous visual field loss on patients’ self-reported vision-related quality of life compared with participants who did not develop glaucoma.

This case report describes a diagnosis of iatrogenic Cushing syndrome as a result of sub-Tenon triamcinolone injection in a patient receiving treatment for HIV who presented with decreased visual acuity in both eyes.

This cohort study compares outcomes of patients with proliferative diabetic retinopathy treated with panretinal photocoagulation (PRP) and subsequent anti–vascular endothelial growth factor (VEGF) injections to a matched cohort of patients treated with anti-VEGF injections and subsequent PRP.

• Bringing Eye Care to the People JAMA Ophthalmology Opinion August 22, 2024 Full Text | pdf link PDF
• Repeat Selective Laser Trabeculoplasty and Open-Angle Glaucoma JAMA Ophthalmology Opinion August 22, 2024 Glaucoma Full Text | pdf link PDF

A man in his early 50s was admitted to the hospital after acute hypoxemic respiratory failure and cardiac arrest following aspiration, requiring 3 minutes of cardiopulmonary resuscitation. One day after extubation, he noticed blurry vision peripherally and difficulty focusing at near. What would you do next?

This post hoc analysis of a randomized clinical trial evaluates the responsiveness of open-angle glaucoma and ocular hypertension to selective laser trabeculoplasty.

This cross-sectional study examines the use of free eye care services for screening to identify eye disease.

This cross-sectional study evaluates ultra-widefield vs Early Treatment Diabetic Retinopathy Study 7-field imaging for the capture of diabetic retinopathy.

• Molecular Sequencing and Biomarkers in Acute Infectious Conjunctivitis JAMA Ophthalmology Opinion August 15, 2024 External Eye Disease Full Text | pdf link PDF
• Moving Forward to a Wider Retinal Field of View JAMA Ophthalmology Opinion August 15, 2024 Diabetic Retinopathy Diabetes Diabetes and Endocrinology Retinal Disorders Full Text | pdf link PDF
• Genetic Testing for Rare Retinal Diseases in Telomere Biology Disorders JAMA Ophthalmology Opinion August 15, 2024 Genetics and Genomics Retinal Disorders Full Text | pdf link PDF

This case series of 11 patients with CTNNB1 syndrome reports the presence of familial exudative vitreoretinonpathy detected via fluorescein angiography under anesthesia, which was previously undetected on ophthalmoscopic examination.

This case report describes a diagnosis of streaky multifocal choroiditis in a boy who presented with distorted vision in his left eye for 3 years.

This cross-sectional study evaluates potential biomarkers in patients with acute infectious conjunctivitis.

This cohort study uses smartwatch data to determine whether outdoor exposure patterns are associated with myopic shift in children in Shanghai, China.

This retrospective encounter-based analysis evaluates the impact of step therapy on macular degeneration drug prescribing patterns among 3 large Medicare Advantage insurers.

This cohort study investigates the association between neighborhood-level social determinants of health and severity of rhegmatogenous retinal detachments at presentation.

• Implications of Neighborhood- and Patient-Level Factors for Eye Care JAMA Ophthalmology Opinion August 8, 2024 Full Text | pdf link PDF

This randomized clinical trial examined rates of recruitment and efficacy outcomes of vitrectomy plus internal limiting membrane peeling adjunctive to a treat-and-extend anti–vascular endothelial growth factor (VEGF) injection regimen for diabetic macular edema.

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Digital Journal of Ophthalmology

Published since 1995,  The Digital Journal of Ophthalmology ( DJO ) is dedicated to the worldwide dissemination of original basic science and clinical research as well as case reports, grand rounds, and images and videos of exceptional teaching value. The DJO is an open-access, peer-reviewed journal for the ophthalmology community with the potential to reach over 3 billion users of the Internet worldwide.  The DJO is indexed in MEDLINE, PubMed Central, and Scopus.

There are no submission or publication fees. Access to journal content is FREE.

Current Issue

Vol. 30 No. 2 (2024)

Original Articles The Versatile Teaching Eye: an affordable, 3D-printed model eye for simulating ophthalmic examination

Case Reports Rotational stability of two different piggyback toric intraocular lenses for correction of high post-keratoplasty pseudophakic ametropia Thrombolysis in acute retinal ischemia treated with tenecteplase Post-traumatic lens absorption with an intact lens capsule Leukocoria in a 4-year-old boy Visual restoration with KPro after face allotransplantation with a grade III phthisical eye

Images & Videos Unilateral West Nile virus chorioretinitis in a 69-year-old woman Subconjunctival Loa loa worm Sea fan neovascularization in retinal detachment Bilateral anterior stromal corneal dystrophy in an 18-year-old male A chondromyxoid fibroma of the orbit with fundus autofluorescence in choroidal folds Ruptured retinal artery macroaneurysm

Published: 2024-06-30

Original Articles

The Versatile Teaching Eye: an affordable, 3D-printed model eye for simulating ophthalmic examination

Case reports.

Rotational stability of two different piggyback toric intraocular lenses for correction of high post-keratoplasty pseudophakic ametropia

Thrombolysis in acute retinal ischemia treated with tenecteplase

Post-traumatic lens absorption with an intact lens capsule

Leukocoria in a 4-year-old boy

Visual restoration with KPro after face allotransplantation with a grade III phthisical eye

Images & videos.

Unilateral West Nile virus chorioretinitis in a 69-year-old woman

Subconjunctival Loa loa worm

Sea fan neovascularization in retinal detachment

Bilateral anterior stromal corneal dystrophy in an 18-year-old male

A chondromyxoid fibroma of the orbit with fundus autofluorescence in choroidal folds

Ruptured retinal artery macroaneurysm

• Open access
• Published: 02 September 2024

Clinical supervisor’s experiences of peer group clinical supervision during COVID-19: a mixed methods study

• Owen Doody   ORCID: orcid.org/0000-0002-3708-1647 1 ,
• Kathleen Markey   ORCID: orcid.org/0000-0002-3024-0828 1 ,
• James Turner   ORCID: orcid.org/0000-0002-8360-1420 2 ,
• Claire O. Donnell   ORCID: orcid.org/0000-0003-2386-7048 1 &
• Louise Murphy   ORCID: orcid.org/0000-0003-2381-3963 1  

BMC Nursing volume  23 , Article number:  612 ( 2024 ) Cite this article

Metrics details

Providing positive and supportive environments for nurses and midwives working in ever-changing and complex healthcare services is paramount. Clinical supervision is one approach that nurtures and supports professional guidance, ethical practice, and personal development, which impacts positively on staff morale and standards of care delivery. In the context of this study, peer group clinical supervision provides allocated time to reflect and discuss care provided and facilitated by clinical supervisors who are at the same grade/level as the supervisees.

To explore the clinical supervisor’s experiences of peer group clinical supervision a mixed methods study design was utilised within Irish health services (midwifery, intellectual disability, general, mental health). The Manchester Clinical Supervision Scale was used to survey clinical supervisors ( n  = 36) and semi-structured interviews ( n  = 10) with clinical supervisors were conducted. Survey data were analysed through SPSS and interview data were analysed utilising content analysis. The qualitative and quantitative data’s reporting rigour was guided by the CROSS and SRQR guidelines.

Participants generally had a positive encounter when providing clinical supervision. They highly appreciated the value of clinical supervision and expressed a considerable degree of contentment with the supervision they provided to supervisees. The advantages of peer group clinical supervision encompass aspects related to self (such as confidence, leadership, personal development, and resilience), service and organisation (including a positive working environment, employee retention, and safety), and patient care (involving critical thinking and evaluation, patient safety, adherence to quality standards, and elevated levels of care).

There are many benefits of peer group clinical supervision at an individual, service, organisation, and patient level. Nevertheless, there is a need to address a lack of awareness and misconceptions surrounding clinical supervision to create an environment and culture conducive to realising its full potential. It is crucial that clinical supervision be accessible to nurses and midwives of all grades across all healthcare services, with national planning to address capacity and sustainability.

Peer Review reports

Within a dynamic healthcare system, nurses and midwives face growing demands, underscoring the necessity for ongoing personal and professional development. This is essential to improve the effectiveness and efficiency of care delivery for patients, families, and societies. Despite the increased emphasis on increasing the quality and safety of healthcare services and delivery, there is evidence highlighting declining standards of nursing and midwifery care [ 1 ]. The recent focus on re-affirming and re-committing to core values guiding nursing and midwifery practice is encouraging such as compassion, care and commitment [ 2 ], competence, communication, and courage [ 3 ]. However, imposing value statements in isolation is unlikely to change behaviours and greater consideration needs to be given to ways in which compassion, care, and commitment are nurtured and ultimately applied in daily practice. Furthermore, concerns have been raised about global staff shortages [ 4 ], the evidence suggesting several contributing factors such as poor workforce planning [ 5 ], job dissatisfaction [ 6 ], and healthcare migration [ 7 ]. Without adequate resources and staffing, compromising standards of care and threats to patient safety will be imminent therefore the importance of developing effective strategies for retaining competent registered nurses and midwives is paramount in today’s climate of increased staff shortages [ 4 ]. Clinical supervision serves as a means to facilitate these advancements and has been linked to heightened job satisfaction, enhanced staff retention, improved staff effectiveness, and effective clinical governance, by aiding in quality improvements, risk management, and heightened accountability [ 8 ].

Clinical supervision is a key component of professional practice and while the aim is largely known, there is no universally accepted definition of clinical supervision [ 8 ]. Clinical supervision is a structured process where clinicians are allowed protected time to reflect on their practice within a supportive environment and with the purpose of developing high-quality clinical care [ 9 ]. Recent literature published on clinical supervision [ 8 , 9 , 10 , 11 , 12 , 13 , 14 , 15 , 16 ] highlights the advantages and merits of clinical supervision. However, there are challenges also identified such as a lack of consensus regarding the meaning and goal, implementation issues, variations in approaches in its operationalisation, and an absence of research evidence on its effectiveness. Duration and experience in clinical supervision link to positive benefits [ 8 ], but there is little evidence of how clinical supervision altered individual behaviours and practices. This is reinforced by Kuhne et al., [ 15 ] who emphasise that satisfaction rather than effectiveness is more commonly examined. It is crucial to emphasise that reviews have pinpointed that clinical supervision lowers the risks of adverse patient outcomes [ 9 ] and demonstrates enhancements in the execution of certain care processes. Peer group clinical supervision is a form of clinical supervision whereby two or more practitioners engage in a supervision or consultation process to improve their professional practice [ 17 ]. There is limited evidence regarding peer group clinical supervision and research on the experiences of peer clinical supervision and stakeholders is needed [ 13 ]. In Ireland, peer group clinical supervision has been recommended and guidelines have been developed [ 18 ]. In the Irish context, peer clinical supervision is where both clinical supervisees and clinical supervisors are peers at the same level/grade. However, greater evidence is required to inform future decisions on the implementation of peer group clinical supervision and the purpose of this study is to explore clinical supervisors’ experiences of peer group clinical supervision. As the focus is on peer group supervisors and utilising mixed methods the experiences of the other stakeholders were investigated and reported separately.

A mixed methods approach was used (survey and semi-structured interviews) to capture clinical supervisor’s experiences of clinical supervision. The study adhered to the Consensus-Based Checklist for Reporting of Survey Studies guidelines [ 19 ] (Supplementary File S1 ) and Standards for Reporting Qualitative Research guidelines [ 20 ] (Supplementary File S2 ).

Participants

This study was conducted with participants who successfully completed a professionally credited award: clinical supervision module run by a university in Ireland (74 clinical supervisors across 5 programmes over 3 years). The specific selection criteria for participants were that they were registered nurses/midwives delivering peer group clinical supervision within the West region of Ireland. The specific exclusion criteria were as follows: (1) nurses and midwives who haven’t finished the clinical supervision module at the University, (2) newly appointed peer group clinical supervisors who have yet to establish their groups and initiate the delivery of peer group clinical supervision.

Measures and procedures

The Manchester Clinical Supervision Scale-26 was used to survey participants in February/March 2022 and measure the peer group clinical supervisors’ overall experiences of facilitating peer group clinical supervision. The Manchester Clinical Supervision Scale-26 is a validated 26-item self-report questionnaire with a Likert-type (1–5) scale ranging from strongly disagree (1) to strongly agree (5) [ 21 ]. The Manchester Clinical Supervision Scale-26 measures the efficiency of and satisfaction with supervision, to investigate the skills acquisition aspect of clinical supervision and its effect on the quality of clinical care [ 21 ]. The instrument consists of two main sections to measure three (normative, restorative, and formative) dimensions of clinical supervision utilising six sub-scales: (1) trust and rapport, (2) supervisor advice/support, (3) improved care/skills, (4) importance/value of clinical supervision, (5) finding time, (6) personal issues/reflections and a total score for the Manchester Clinical Supervision Scale-26 is also calculated. Section two consisted of the demographic section of the questionnaire and was tailored to include eight demographic questions concerning the supervisor’s demographics, supervisee characteristics, and characteristics of clinical supervision sessions. There were also two open field questions on the Manchester Clinical Supervision Scale-26 (model of clinical supervision used and any other comments about experience of peer group clinical supervision). The main question about participants’ experiences with peer clinical supervision was “What was your experience of peer clinical supervision?” This was gathered through individual semi-structured interviews lasting between 20 and 45 min, in March/April 2022 (Supplementary file 3 ).

Ethical considerations

Health service institutional review boards of two University hospitals approved this study (Ref: 091/19 and Ref: C.A. 2199). Participants were recruited after receiving a full explanation of the study’s purpose and procedure and all relevant information. Participants were aware of potential risks and benefits and could withdraw from the study, or the survey could be stopped at any time. Informed consent was recorded, and participant identities were protected by using a pseudonym to protect anonymity.

Data analysis method

Survey data was analysed using the data analysis software package Statistical Package for the Social Sciences, version 26 (SPSS Inc., Chicago, Il, USA). Descriptive analysis was undertaken to summarise responses to all items and categorical variables (nominal and ordinal) were analysed using frequencies to detail the number and percentage of responses to each question. Scores on the Manchester Clinical Supervision Scale-26 were reverse scored for 9 items (Q1-Q6, Q8, Q20,21) and total scores for each of the six sub-scales were calculated by adding the scores for each item. Raw scores for the individual sub-scales varied in range from 0 to 20 and these raw scores were then converted to percentages which were used in addition to the raw scores for each sub-scale to describe and summarise the results of the Manchester Clinical Supervision Scale-26. Cronbach’s alpha coefficient was undertaken with the 26 questions included within the Manchester Clinical Supervision Scale-26 and more importantly with each of the dimensions in the Manchester Clinical Supervision Scale-26. The open-ended questions on the Manchester Clinical Supervision Scale-26 and interviews were analysed using content analysis guided by Colorafi and Evans [ 22 ] and categories were generated using their eight steps, (1) creating a coding framework, (2) adding codes and memos, (3) applying the first level of coding, (4) categorising codes and applying the second level of coding, (5) revising and redefining the codes, (6) adding memos, (7) visualising data and (8) representing the data.

Research rigour

To ensure the validity and rigour of this study the researchers utilised the Manchester Clinical Supervision Scale-26 a recognised clinical supervision tool with good reliability and wide usage. Interviews were recorded, transcribed, and verified by four participants, data were collected until no new components appeared, data collection methods and analysis procedures were described, and the authors’ biases were minimised throughout the research process. The Manchester Clinical Supervision Scale-26 instrument internal consistency reliability was assessed which was overall good (α = 0.878) with individual subscale also good e.g., normative domain 0.765, restorative domain 0.864, and formative domain 0.900. Reporting rigour was demonstrated using the Consensus-Based Checklist for Reporting of Survey Studies guidelines [ 19 ] and Standards for Reporting Qualitative Research guidelines [ 20 ].

Quantitative data

Participant and clinical supervision characteristics.

Thirty-six of the fifty-two (69.2%) peer group clinical supervisors working across a particular region of Ireland responded to the Manchester Clinical Supervision Scale-26 survey online via Qualtrics. Table 1 identifies the demographics of the sample who were predominantly female (94.4%) with a mean age of 44.7 years (SD. 7.63).

Peer group clinical supervision session characteristics (Table  2 ) highlight over half of peer group clinical supervisors ( n  = 20, 55.6%) had been delivering peer group clinical supervision for less than one year and were mainly delivered to female supervisees ( n  = 28, 77.8%). Most peer group clinical supervision sessions took place monthly ( n  = 32, 88.9%) for 31–60 min ( n  = 27, 75%).

Manchester Clinical Supervision Scale-26 results

Participants generally viewed peer group clinical supervision as effective (Table  3 ), the total mean Manchester Clinical Supervision Scale-26 score among all peer group clinical supervisors was 76.47 (SD. 12.801) out of 104, Surpassing the clinical supervision threshold score of 73, which was established by the developers of the Manchester Clinical Supervision Scale-26 as the benchmark indicating proficient clinical supervision provision [ 21 ]. Of the three domains; normative, formative, and restorative, the restorative domain scored the highest (mean 28.56, SD. 6.67). The mean scores compare favourably to that of the Manchester Clinical Supervision Scale-26 benchmark data and suggest that the peer group clinical supervisors were satisfied with both the level of support, encouragement, and guidance they provided and the level of trust/rapport they had developed during the peer group clinical supervision sessions. 83.3% ( n  = 30) of peer group clinical supervisors reported being either very satisfied ( n  = 12, 33.3%) or moderately satisfied ( n  = 18, 50%) with the peer group clinical supervision they currently delivered. Within the peer group clinical supervisor’s supervisee related issues ( n  = 17, 47.2%), work environment-related issues ( n  = 16, 44.4%), staff-related issues ( n  = 15, 41.7%) were reported as the most frequent issues, with patient/client related issues being less frequent ( n  = 8, 22.2%). The most identified model used to facilitate peer group clinical supervision was the Proctors model ( n  = 8, 22.22%), which was followed by group ( n  = 2, 5.55%), peer ( n  = 2, 5.55%), and a combination of the seven-eyed model of clinical supervision and Proctors model ( n  = 1, 2.77%) with some not sure what model they used ( n  = 2, 5.553%) and 58.33% ( n  = 21) did not report what model they used.

Survey open-ended question

‘Please enter any additional comments , which are related to your current experience of delivering Peer Group Clinical Supervision.’ There were 22 response comments to this question, which represented 61.1% of the 36 survey respondents, which were analysed using content analysis guided by Colorafi & Evans [ 22 ]. Three categories were generated. These included: personal value/benefit of peer group clinical supervision, challenges with facilitating peer group clinical supervision, and new to peer group clinical supervision.

The first category ‘personal value/benefit of peer group clinical supervision’ highlighted positive experiences of both receiving and providing peer group clinical supervision. Peer group clinical supervisors reported that they enjoyed the sessions and found them both worthwhile and beneficial for both the group and them as peer group clinical supervisors in terms of creating a trusted supportive group environment and motivation to develop. Peer group clinical supervision was highlighted as very important for the peer group clinical supervisors working lives and they hoped that there would be more uptake from all staff. One peer group clinical supervisor expressed that external clinical supervision was a ‘lifeline’ to shaping their supervisory journey to date.

The second category ‘challenges with facilitating peer group clinical supervision’, identified time constraints, lack of buy-in/support from management, staff shortages, lack of commitment by supervisees, and COVID-19 pandemic restrictions and related sick leave, as potential barriers to facilitating peer group clinical supervision. COVID-19 was perceived to have a negative impact on peer group clinical supervision sessions due to staff shortages, which resulted in difficulties for supervisees attending the sessions during work time. Peer group clinical supervisors felt that peer group clinical supervision was not supported by management and there was limited ‘buy-in’ at times. There was also a feeling expressed that peer group clinical supervision was in its infancy, as COVID-19 and its related restrictions impacted on this by either slowing down the process of commencing peer group clinical supervision in certain areas or having to move online. However, more recently improvements in managerial support and supervisee engagement with the peer group clinical supervision process are noted.

The final category ‘new to peer group clinical supervision’ highlighted that some peer group clinical supervisors were new to the process of providing peer group clinical supervision and some felt that this survey was not a true reflection of their experience of delivering peer group clinical supervision, as they were not fully established yet as clinical supervisors due to the impact of COVID-19. Peer group clinical supervisors identified that while they were new to providing peer group clinical supervision, they were enjoying it and that it was a learning curve for them.

Qualitative data

The qualitative phase explored peer group clinical supervisors’ ( n  = 10) own experiences of preparation received and experiences of being a peer group clinical supervisor. Three themes were identified through data analysis, building the foundations, enacting engagement and actions, and realities (Table  4 ).

Building the foundations

This theme highlights the importance of prior knowledge, awareness, and training but also the recruitment process and education in preparing peer group clinical supervisors.

Knowledge and awareness

Participant’s prior knowledge and awareness of peer group clinical supervision was mixed with some reporting having little or no knowledge of clinical supervision.

I’m 20 years plus trained as a nurse , and I had no awareness of clinical supervision beforehand , I really hadn’t got a clue what all of this was about , so it was a very new concept to me (Bernie) .

Others were excited about peer group clinical supervision and while they could see the need they were aware that there may be limited awareness of the value and process of clinical supervision among peers.

I find that there’s great enthusiasm and passion for clinical supervision as it’s a great support mechanism for staff in practice , however , there’s a lack of awareness of clinical supervision (Jane) .

Recruitment

Some participants highlighted that the recruitment process to become a peer group clinical supervisor was vague in some organisations with an unclear and non-transparent process evident where people were chosen by the organisation’s management rather than self-selecting interested parties.

It was just the way the training was put to the people , they were kind of nominated and told they were going and there was a lot of upset over that , so they ended up in some not going at all (Ailbhe) .

In addition, the recruitment process was seen as top loaded where senior grades of staff were chosen, and this limited staff nurse grade opportunities where there was a clear need for peer group clinical supervisors and support.

We haven’t got down to the ground level like you know we’ve done the directors , we’ve done the CNM3s the CNM2s we are at the CNM1s , so we need to get down to the staff nurse level so the nurses at the direct frontline are left out and aren’t receiving supervision because we don’t have them trained (Bernie) .

Training and education

Participants valued the training and education provided but there was a clear sense of ‘imposter syndrome’ for some peer group clinical supervisors starting out. Participants questioned their qualifications, training duration, and confidence to undertake the role of peer group clinical supervisor.

Because it is group supervision and I know that you know they say that we are qualified to do supervision and you know we’re now qualified clinical supervisors but I’m not sure that a three-month module qualifies you to be at the top of your game (Maria) .

Participants when engaged in the peer group clinical supervisor educational programme did find it beneficial and the true benefit was the actual re-engagement in education and published evidence along with the mix of nursing and midwifery practice areas.

I found it very beneficial , I mean I hadn’t been engaged in education here in a while , so it was great to be back in that field and you know with the literature that’s big (Claire) .

Enacting engagement and actions

This theme highlights the importance of forming the groups, getting a clear message out, setting the scene, and grounding the group.

Forming the groups

Recruitment for the group was of key importance to the peer group clinical supervisor and they all sent out a general invitation to form their group. Some supervisors used invitation letters or posters in addition to a general email and this was effective in recruiting supervisees.

You’re reaching out to people , I linked in with the ADoN and I put together a poster and circulated that I wasn’t ‘cherry picking , and I set up a meeting through Webex so people could get a sense of what it was if they were on the fence about it or unsure if it was for them (Karen) .

In forming the peer clinical supervision groups consideration needs to be given to the actual number of supervisees and participants reported four to six supervisees as ideal but that number can alter due to attendance.

The ideal is having five or six consistent people and that they all come on board and that you get the dynamics of the group and everything working (Claire) .

Getting a clear message out

Within the recruitment process, it was evident that there was a limited and often misguided understanding or perception of peer group clinical supervision.

Greater awareness of what actually clinical supervision is , people misjudge it as a supervision where someone is appraising you , when in fact it is more of a support mechanism , I think peer support is the key element that needs to be brought out (Jane) .

Given the lack of clarity and understanding regarding peer group clinical supervision, the participants felt strongly that further clarity is needed and that the focus needs to be on the support it offers to self, practice, and the profession.

Clinical supervision to me is clinical leadership (Jane) .

Setting the scene and grounding the group

In the initial phase of the group coming together the aspect of setting the scene and grounding the group was seen as important. A key aspect of this process was establishing the ground rules which not only set the boundaries and gave structure but also ensured the adoption of principles of trust, confidentiality, and safety.

We start with the ground rules , they give us structure it’s our contract setting out the commitment the expectation for us all , and the confidentiality as that’s so important to the trust and safety and building the relationships (Brid) .

Awareness of group dynamics is important in this process along with awareness of the group members (supervisees) as to their role and expectations.

I reiterate the role of each person in relation to confidentiality and the relationship that they would have with each other within the group and the group is very much aware that it is based on respect for each person’s point of view people may have a fear of contributing to the group and setting the ground rules is important (Jane) .

To ground the group, peer group clinical supervisors saw the importance of being present and allowing oneself to be in the room. This was evident in the time allocated at the start of each session to allow ‘grounding’ to occur in the form of techniques such as a short meditation, relaxation, or deep breathing.

At the start , I do a bit of relaxation and deep breathing , and I saw that with our own external supervisor how she settled us into place so very much about connecting with your body and you’ve arrived , then always come in with the contract in my first sentence , remember today you know we’re in a confidential space , of course , you can take away information , but the only information you will take from today is your own information and then the respect aspect (Mary Rose) .

This settling in and grounding was seen as necessary for people to feel comfortable and engage in the peer group clinical supervision process where they could focus, be open, converse, and be aware of their role and the role of peer group clinical supervision.

People have to be open, open about their practice and be willing to learn and this can only occur by sharing, clinical supervision gives us the space to do it in a space where we know we will be respected, and we can trust (Claire) .

This theme highlights the importance of the peer group clinical supervisors’ past experiences, delivering peer group clinical supervision sessions, responding to COVID-19, personal and professional development, and future opportunities.

Past experiences

Past experiences of peer group clinical supervisors were not always positive and for one participant this related to the lack of ground rules or focus of the sessions and the fact it was facilitated by a non-nurse.

In the past , I suppose I would have found it very frustrating as a participant because I just found that it was going round in circles , people moaning and you know it wasn’t very solution focused so I came from my situation where I was very frustrated with clinical supervision , it was facilitated by somebody that was non-nursing then it wasn’t very , there wasn’t the ground rules , it was very loose (Caroline) .

However, many did not have prior experience of peer group clinical supervision. Nonetheless, through the education and preparation received, there was a sense of commitment to embrace the concept, practice, and philosophy.

I did not really have any exposure or really much information on clinical supervision , but it has opened my eyes , and as one might say I am now a believer (Brid) .

Delivering peer group clinical supervision

In delivering peer group clinical supervision, participants felt supervisees were wary, as they did not know what peer group clinical supervision was, and they had focused more on the word supervision which was misleading to them. Nonetheless, the process was challenging, and buy-in was questioned at an individual and managerial level.

Buy-in wasn’t great I think now of course people will blame the pandemic , but this all happened before the pandemic , there didn’t seem to be you know , the same support from management that I would have expected so I kind of understood it in a way because then there wasn’t the same real respect from the practitioners either (Mary Rose) .

From the peer group clinical supervisor’s perspective, they were all novices in delivering/facilitating peer group clinical supervision sessions, and the support of the external clinical supervisors, and their own peer group clinical supervision sessions were invaluable along with a clinical supervision model.

Having supervision myself was key and something that is vital and needed , we all need to look at our practice and how we work it’s no good just facilitating others without being part of the process yourself but for me I would say the three principles of clinical supervision , you know the normative , formative and restorative , I keep hammering that home and bring that in regularly and revisit the contract and I have to do that often you know (Claire) .

All peer group clinical supervisors commented on the preparation for their peer group clinical supervision sessions and the importance of them having the right frame of mind and that often they needed to read over their course work and published evidence.

I want everybody to have a shared voice and you know that if one person , there is something that somebody feels very strongly and wants to talk about it that they e-mail in advance like we don’t have a set agenda but that’s agreed from the participant at the start (Caroline) .

To assist this, the peer group clinical supervisors noted the importance of their own peer group clinical supervision, the support of their peers, and external clinical supervisors. This preparation in an unpredictable situation can be difficult but drawing on one’s experience and the experience within the group can assist in navigating beyond unexpected situations.

I utilise the models of clinical supervision and this helps guide me , I am more of a facilitator of the group we are experts in our own area and our own role but you can only be an expert if you take the time to examine your practice and how you operate in your role (Brid) .

All clinical supervisors noted that the early sessions can be superficial, and the focus can be on other practice or management issues, but as time moves on and people become more engaged and involved it becomes easier as their understanding of supervision becomes clearer. In addition, there may be hesitancy and people may have difficulty opening up with certain people in the group and this is a reality that can put people off.

Initially there was so much managerial bashing and I think through supervision , I began to kind of think , I need the pillars of supervision , the governance , bringing more knowledge and it shifted everything in the room , trying to marry it with all the tensions that people have (Mary Rose) .

For some clinical supervisors, there were expected and unexpected challenges for them as clinical supervisors in terms of the discussions veering off course and expectations of their own ability.

The other big challenge is when they go off , how do you bring him back , you know when they veer off and you’re expected to be a peer , but you have to try and recoil that you have to get the balance with that right (Mary Rose) .

While peer group clinical supervision is accepted and seen as a valuable process by the peer group clinical supervisors, facilitating peer group supervision with people known to you can be difficult and may affect the process.

I’d love to supervise a group where I actually don’t know the people , I don’t know the dynamics within the group , and I’d love to see what it would be like in a group (Bernie) .

Of concern to clinical supervisors was the aspect of non-attendance and while there may be valid reasons such as COVID-19 the absence of a supervisee for several sessions can affect the group dynamics, especially if the supervisee has only engaged with early group sessions.

One of the ones that couldn’t attend because of COVID and whatever , but she’s coming to the next one and I just feel there’s a lot of issues in her area and I suppose I’m mindful that I don’t want that sort of thing to seep in , so I suppose it’s just for me just to keep reiterating the ground rules and the boundaries , that’s something I just have to manage as a facilitator , but what if they don’t attend how far will the group have progressed before she attends (Caroline) .

Responding to COVID-19

The advent of COVID-19 forced peer group clinical supervisors to find alternative means of providing peer group clinical supervision sessions which saw the move from face-to-face to online sessions. The online transition was seen as seamless for many established groups while others struggled to deliver sessions.

With COVID we did online for us it was fine because we were already formed (Corina) .

While the transition may have been positive many clinical supervisors came across issues because they were using an online format that would not be present in the face-to-face session.

We did have a session where somebody was in the main office and they have a really loud booming voice and they were saying stuff that was not appropriate to say outside of clinical supervision and I was like are you in the office can you lower it down a bit can you put your headphones on (Maria) .

However, two peer group clinical supervisors ceased or hasted the progress of rolling out peer group clinical supervision sessions mainly due to redeployment and staff availability.

With COVID it just had to be canceled here , it’s just the whole thing was canceled so it was very , very difficult for people (Mary Rose) .

It was clear from clinical supervisors that online sessions were appropriate but that they felt they were only appropriate for existing established groups that have had the opportunity to build relationships, develop trust, embed the ground rules, and create the space for open communication and once established a combined approach would be appropriate.

Since we weren’t as established as a group , not everybody knew each other it would be difficult to establish that so we would hold off/reschedule , obviously COVID is a major one but also I suppose if you have an established group now , and again , you could go to a remote one , but I felt like since we weren’t established as a group it would be difficult to develop it in that way (Karen) .

Within practice COVID-19 took priority and other aspects such as peer group clinical supervision moved lower down on the priority list for managers but not for the clinical supervisors even where redeployment occurred.

With COVID all the practical side , if one of the managers is dealing with an outbreak , they won’t be attending clinical supervision , because that has to be prioritised , whereas we’ve prioritised clinical supervision (Maria) .

The valuing of peer group clinical supervision was seen as important by clinical supervisors, and they saw it as particularly needed during COVID-19 as staff were dealing with many personal and professional issues.

During the height of COVID , we had to take a bit of a break for four months as things were so demanding at work for people but then I realised that clinical supervision was needed and started back up and they all wanted to come back (Brid) .

Having peer group clinical supervision during COVID-19 supported staff and enabled the group to form supportive relationships.

COVID has impacted over the last two years in every shape and they needed the supervision and the opportunity to have a safe supportive space and it gelled the group I think as we all were there for each other (Claire) .

While COVID-19 posed many challenges it also afforded clinical supervisors and supervisees the opportunity for change and to consider alternative means of running peer group clinical supervision sessions. This change resulted in online delivery and in reflecting on both forms of delivery (face-to-face and online) clinical supervisors saw the benefit in both. Face-to-face was seen as being needed to form the group and then the group could move online once the group was established with an occasional periodic face-to-face session to maintain motivation commitment and reinforce relationships and support.

Online formats can be effective if the group is already established or the group has gone through the storming and forming phase and the ground rules have been set and trust built , then I don’t see any problem with a blended online version of clinical supervision , and I think it will be effective (Jane) .

Personal and professional development

Growth and development were evident from peer group clinical supervisors’ experiences and this growth and development occurred at a personal, professional, and patient/client level. This development also produced an awakening and valuing of one’s passion for self and their profession.

I suppose clinical supervision is about development I can see a lot of development for me and my supervisees , you know personally and professionally , it’s the support really , clinical supervision can reinvigorate it’s very exciting and a great opportunity for nursing to support each other and in care provision (Claire) .

A key to the peer group clinical supervisor’s development was the aspect of transferable skills and the confidence they gained in fulfilling their role.

All of these skills that you learn are transferable and I am a better manager because of clinical supervision (Maria) .

The confidence and skills gained translated into the clinical supervisor’s own practice as a clinical practitioner and clinical supervisor but they were also realistic in predicting the impact on others.

I have empowered my staff , I empower them to use their voice and I give my supervisees a voice and hope they take that with them (Corina) .

Fundamental to the development process was the impact on care itself and while this cannot always be measured or identified, the clinical supervisors could see that care and support of the individual practitioner (supervisee) translated into better care for the patient/client.

Care is only as good as the person delivering it and what they know , how they function and what energy and passion they have , and clinical supervision gives the person support to begin to understand their practice and how and why they do things in a certain way and when they do that they can begin to question and even change their way of doing something (Brid) .

Future opportunities

Based on the clinical supervisor’s experiences there was a clear need identified regarding valuing and embedded peer group clinical supervision within nursing/midwifery practice.

There has to be an emphasis placed on supervision it needs to be part of the fabric of a service and valued by all in that service , we should be asking why is it not available if it’s not there but there is some work first on promoting it and people knowing what it actually is and address the misconceptions (Claire) .

While such valuing and buy-in are important, it is not to say that all staff need to have peer group clinical supervision so as to allow for personal choice. In addition, to value peer group clinical supervision it needs to be evident across all staffing grades and one could question where the best starting point is.

While we should not mandate that all staff do clinical supervision it should become embedded within practice more and I suppose really to become part of our custom and practice and be across all levels of staff (Brid) .

When peer group clinical supervision is embedded within practice then it should be custom and practice, where it is included in all staff orientations and is nationally driven.

I suppose we need to be driving it forward at the coal face at induction , at orientation and any development for the future will have to be driven by the NMPDUs or nationally (Ailbhe) .

A formalised process needs to address the release of peer group clinical supervisors but also the necessity to consider the number of peer group clinical supervisors at a particular grade.

The issue is release and the timeframe as they have a group but they also have their external supervision so you have to really work out how much time you’re talking about (Maria) .

Vital within the process of peer group clinical supervision is receiving peer group clinical supervision and peer support and this needs to underpin good peer group clinical supervision practice.

Receiving peer group supervision helps me , there are times where I would doubt myself , it’s good to have the other group that I can go to and put it out there to my own group and say , look at this , this is what we did , or this is what came up and this is how (Bernie) .

For future roll out to staff nurse/midwife grade resourcing needs to be considered as peer group clinical supervisors who were managers could see the impact of having several peer group clinical supervisors in their practice area may have on care delivery.

Facilitating groups is an issue and needs to be looked at in terms of the bigger picture because while I might be able to do a second group the question is how I would be supported and released to do so (Maria) .

While there was ambiguity regarding peer group clinical supervision there was an awareness of other disciplines availing of peer group clinical supervision, raising questions about the equality of supports available for all disciplines.

I always heard other disciplines like social workers would always have been very good saying I can’t meet you I have supervision that day and I used to think my God what’s this fabulous hour that these disciplines are getting and as a nursing staff it just wasn’t there and available (Bernie) .

To address this equity issue and the aspect of low numbers of certain grades an interdisciplinary approach within nursing and midwifery could be used or a broader interdisciplinary approach across all healthcare professionals. An interdisciplinary or across-services approach was seen as potentially fruitful.

I think the value of interprofessional or interdisciplinary learning is key it addresses problem-solving from different perspectives that mix within the group is important for cross-fertilisation and embedding the learning and developing the experience for each participant within the group (Jane) .

As we move beyond COVID-19 and into the future there is a need to actively promote peer group clinical supervision and this would clarify what peer group clinical supervision actually is, its uptake and stimulate interest.

I’d say it’s like promoting vaccinations if you could do a roadshow with people , I think that would be very beneficial , and to launch it , like you have a launch an official launch behind it (Mary Rose) .

The advantages of peer group clinical supervision highlighted in this study pertain to self-enhancement (confidence, leadership, personal development, resilience), organisational and service-related aspects (positive work environment, staff retention, safety), and professional patient care (critical thinking and evaluation, patient safety, adherence to quality standards, elevated care standards). These findings align with broader literature that acknowledges various areas, including self-confidence and facilitation [ 23 ], leadership [ 24 ], personal development [ 25 ], resilience [ 26 ], positive/supportive working environment [ 27 ], staff retention [ 28 ], sense of safety [ 29 ], critical thinking and evaluation [ 30 ], patient safety [ 31 ], quality standards [ 32 ] and increased standards of care [ 33 ].

In this study, peer group clinical supervision appeared to contribute to the alleviation of stress and anxiety. Participants recognised the significance of these sessions, where they could openly discuss and reflect on professional situations both emotionally and rationally. Central to these discussions was the creation of a safe, trustworthy, and collegial environment, aligning with evidence in the literature [ 34 ]. Clinical supervision provided a platform to share resources (information, knowledge, and skills) and address issues while offering mutual support [ 35 ]. The emergence of COVID-19 has stressed the significance of peer group clinical supervision and support for the nursing/midwifery workforce [ 36 ], highlighting the need to help nurses/midwifes preserve their well-being and participate in collaborative problem-solving. COVID-19 impacted and disrupted clinical supervision frequency, duration and access [ 37 ]. What was evident during COVID-19 was the stress and need for support for staff and given the restorative or supportive functions of clinical supervision it is a mechanism of support. However, clinical supervisors need support themselves to be able to better meet the supervisee’s needs [ 38 ].

The value of peer group clinical supervision in nurturing a conducive working environment cannot be overstated, as it indorses the understanding and adherence to workplace policies by empowering supervisees to understand the importance and rationale behind these policies [ 39 ]. This becomes vital in a continuously changing healthcare landscape, where guidelines and policies may be subject to change, especially in response to situations such as COVID-19. In an era characterised by international workforce mobility and a shortage of healthcare professionals, a supportive and positive working environment through the provision of peer group clinical supervision can positively influence staff retention [ 40 ], enhance job satisfaction [ 41 ], and mitigate burnout [ 42 ]. A critical aspect of the peer group clinical supervision process concerns providing staff the opportunity to reflect, step back, problem-solve and generate solutions. This, in turn, ensures critical thinking and evaluation within clinical supervision, focusing on understanding the issues and context, and problem-solving to draw constructive lessons for the future [ 30 ]. Research has determined a link between clinical supervision and improvements in the quality and standards of care [ 31 ]. Therefore, peer group clinical supervision plays a critical role in enhancing patient safety by nurturing improved communication among staff, facilitating reflection, promoting greater self-awareness, promoting the exchange of ideas, problem-solving, and facilitating collective learning from shared experiences.

Starting a group arose as a foundational aspect emphasised in this study. The creation of the environment through establishing ground rules, building relationships, fostering trust, displaying respect, and upholding confidentiality was evident. Vital to this process is the recruitment of clinical supervisees and deciding the suitable group size, with a specific emphasis on addressing individuals’ inclination to engage, their knowledge and understanding of peer group clinical supervision, and dissipating any lack of awareness or misconceptions regarding peer group supervision. Furthermore, the educational training of peer group clinical supervisors and the support from external clinical supervisors played a vital role in the rollout and formation of peer group clinical supervision. The evidence stresses the significance of an open and safe environment, wherein supervisees feel secure and trust their supervisor. In such an environment, they can effectively reflect on practice and related issues [ 41 ]. This study emphasises that the effectiveness of peer group supervision is more influenced by the process than the content. Clinical supervisors utilised the process to structure their sessions, fostering energy and interest to support their peers and cultivate new insights. For peer group clinical supervision to be effective, regularity is essential. Meetings should be scheduled in advance, allocate protected time, and take place in a private space [ 35 ]. While it is widely acknowledged that clinical supervisors need to be experts in their professional field to be credible, this study highlights that the crucial aspects of supervision lie in the quality of the relationship with the supervisor. The clinical supervisor should be supportive, caring, open, collaborative, sensitive, flexible, helpful, non-judgmental, and focused on tacit knowledge, experiential learning, and providing real-time feedback.

Critical to the success of peer group clinical supervision is the endorsement and support from management, considering the organisational culture and attitudes towards the practice of clinical supervision as an essential factor [ 43 ]. This support and buy-in are necessary at both the management and individual levels [ 28 ]. The primary obstacles to effective supervision often revolve around a lack of time and heavy workloads [ 44 ]. Clinical supervisors frequently struggle to find time amidst busy environments, impacting the flexibility and quality of the sessions [ 45 ]. Time constraints also limit the opportunity for reflection within clinical supervision sessions, leaving supervisees feeling compelled to resolve issues on their own without adequate support [ 45 ]. Nevertheless, time-related challenges are not unexpected, prompting a crucial question about the value placed on clinical supervision and its integration into the culture and fabric of the organisation or profession to make it a customary practice. Learning from experiences like those during the COVID-19 pandemic has introduced alternative ways of working, and the use of technology (such as Zoom, Microsoft Teams, Skype) may serve as a means to address time, resource, and travel issues associated with clinical supervision.

Despite clinical supervision having a long international history, persistent misconceptions require attention. Some of these include not considering clinical supervision a priority [ 46 ], perceiving it as a luxury [ 41 ], deeming it self-indulgent [ 47 ], or viewing it as mere casual conversation during work hours [ 48 ]. A significant challenge lies in the lack of a shared understanding regarding the role and purpose of clinical supervision, with past perceptions associating it with surveillance and being monitored [ 48 ]. These negative connotations often result in a lack of engagement [ 41 ]. Without encouragement and recognition of the importance of clinical supervision from management or the organisation, it is unlikely to become embedded in the organisational culture, impeding its normalisation [ 39 ].

In this study, some peer group clinical supervisors expressed feelings of being impostors and believed they lacked the knowledge, skills, and training to effectively fulfil their roles. While a deficiency in skills and competence are possible obstacles to providing effective clinical supervision [ 49 ], the peer group clinical supervisors in this study did not report such issues. Instead, their concerns were more about questioning their ability to function in the role of a peer group clinical supervisor, especially after a brief training program. The literature acknowledges a lack of training where clinical supervisors may feel unprepared and ill-equipped for their role [ 41 ]. To address these challenges, clinical supervisors need to be well-versed in professional guidelines and ethical standards, have clear roles, and understand the scope of practice and responsibilities associated with being a clinical supervisor [ 41 ].

The support provided by external clinical supervisors and the peer group clinical supervision sessions played a pivotal role in helping peer group clinical supervisors ease into their roles, gain experiential learning, and enhance their facilitation skills within a supportive structure. Educating clinical supervisors is an investment, but it should not be a one-time occurrence. Ongoing external clinical supervision for clinical supervisors [ 50 ] and continuous professional development [ 51 ] are crucial, as they contribute to the likelihood of clinical supervisors remaining in their roles. However, it is important to interpret the results of this study with caution due to the small sample size in the survey. Generalising the study results should be approached with care, particularly as the study was limited to two regions in Ireland. However, the addition of qualitative data in this mixed-methods study may have helped offset this limitation.

This study highlights the numerous advantages of peer group clinical supervision at individual, service, organisational, and patient/client levels. Success hinges on addressing the initial lack of awareness and misconceptions about peer group clinical supervision by creating the right environment and establishing ground rules. To unlock the full potential of peer group clinical supervision, it is imperative to secure management and organisational support for staff release. More crucially, there is a need for valuing and integrating peer group clinical supervision into nursing and midwifery education and practice. Making peer group clinical supervision accessible to all grades of nurses and midwives across various healthcare services is essential, necessitating strategic planning to tackle capacity and sustainability challenges.

Data availability

Data are available from the corresponding author upon request owing to privacy or ethical restrictions.

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Acknowledgements

The research team would like to thank all participants for their collaboration, the HSE steering group members and Carmel Hoey, NMPDU Director, HSE West Mid West, Dr Patrick Glackin, NMPD Area Director, HSE West, Annette Cuddy, Director, Centre of Nurse and Midwifery Education Mayo/Roscommon; Ms Ruth Hoban, Assistant Director of Nursing and Midwifery (Prescribing), HSE West; Ms Annette Connolly, NMPD Officer, NMPDU HSE West Mid West.

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Doody, O., Markey, K., Turner, J. et al. Clinical supervisor’s experiences of peer group clinical supervision during COVID-19: a mixed methods study. BMC Nurs 23 , 612 (2024). https://doi.org/10.1186/s12912-024-02283-3

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Prevalence of cerebral visual impairment in developmental and Epileptic Encephalopathies: a systematic review protocol

• Martina Giorgia Perinelli 1 ,
• Megan Abbott 3 , 4 ,
• Ganna Balagura 1 ,
• Antonella Riva 1 ,
• Elisabetta Amadori 2 ,
• Alberto Verrotti 5 ,
• Scott Demarest 3 , 4 &
• Pasquale Striano   ORCID: orcid.org/0000-0002-6065-1476 1 , 2  

Systematic Reviews volume  13 , Article number:  223 ( 2024 ) Cite this article

Metrics details

Developmental and Epileptic Encephalopathies (DEEs) are defined by drug-resistant seizures and neurodevelopmental disorders. Over 50% of patients have a genetic cause. Studies have shown that patients with DEEs, regardless of genetic diagnosis, experience a central visual function disorder known as Cerebral (cortical) Visual Impairment (CVI). The prevalence of CVI in DEE patients is currently unknown. A quantitative synthesis of existing data on the prevalence rates of this condition would aid in understanding the magnitude of the problem, outlining future research, and suggesting the need for therapeutic strategies for early identification and prevention of the disorder.

The protocol followed the PRISMA-P statement for systematic review and meta-analysis protocols. The review will adhere to the JBI Manual for Evidence Synthesis (Systematic Reviews of Prevalence and Incidence) and use the CoCoPop framework to establish eligibility criteria. We will conduct a comprehensive search of several databases, including MEDLINE, EMBASE, Science Direct, Scopus, PsychINFO, Wiley, Highwire Press, and Cochrane Library of Systematic Reviews. Our primary focus will be determining the prevalence of cerebral visual impairments (Condition) in patients with developmental and epileptic encephalopathy (Population). To ensure clarity, we will provide a narrative summary of the risk of bias in the studies we include. The Cochrane Q statistic will be used to assess heterogeneity between studies. If the quantitative synthesis includes more than 10 studies, potential sources of heterogeneity will be investigated through subgroup and meta-regression analyses. Meta(bias)es analysis will also be performed. The quality of evidence for all outcomes will be evaluated using the Grading of Recommendations Assessment Development and Evaluation (GRADE) working group methodology.

This protocol outlines a systematic review and meta-analysis to identify, collect, evaluate, and integrate epidemiological knowledge related to the prevalence of CVI in patients with DEEs. To the best of our knowledge, no other systematic review and meta-analysis has addressed this specific issue. The results will provide useful information for understanding the extent of the problem, outlining future research, and suggesting the need for early identification strategies.

Systematic review registrations

This Systematic Review Protocol was registered in PROSPERO (CRD42023448910).

Peer Review reports

Introduction

Background and rationale.

Developmental and Epileptic Encephalopathies (DEEs) are characterized by epileptic seizures, mainly drug-resistant, neurodevelopmental disorders (neuro- and psychomotor regression, intellectual disability, cognitive impairment, behavioural disorders, and relational difficulties) [ 1 ]. In both clinical and pre-clinical studies, it has been observed that patients with DEEs, regardless of the genetic diagnosis, present a disorder of visual functions of central origin defined in the literature as “Cerebral (cortical) Visual Impairment” (CVI) [ 1 ]. The clinical features of CVI differ from patient to patient [ 2 ] and are represented by a broad spectrum of visual disorders that include ophthalmological, oculomotor and perceptual anomalies [ 3 ]. Patients with DEEs may present with oculomotor and perceptual alterations, and visuospatial and visuo-perceptual dysfunctions [ 1 ]. The clinical presentations are attributable to anomalies of the primary visual pathway and associated visual areas. Abnormalities of the oculomotor apparatus and ocular system can be associated.

The ILAE Task Force on Nosology and Syndrome Definition divides DEEs according to the age of onset of the first seizure [ 1 ]. More than half of patients have a genetic aetiology.

To date, the relationship between epileptic seizures, neurodevelopmental disorders and CVI is very complex and severe neuro- and psychomotor delay and intellectual disability often have a strong negative impact on the quality of life of patients and their caregivers/families.

Different studies conducted in recent years [ 4 , 5 , 6 , 7 , 8 , 9 ] in patients with CDKL5 Developmental and Epileptic Encephalopathy (CDKL5-DEE) have shown that CVI is one of the main features of the disease. Similarly, studies conducted in the early 2000s in patients with West Syndrome [ 10 , 11 , 12 ] demonstrated that visual function skills were already impaired at the onset of the spasms. Studies with similar results have been conducted in patients with Dravet syndrome [ 13 , 14 ]. Furthermore, CVI is a common feature of other forms of DEEs. For instance, it has been identified in patients with mutations in the KCNQ2 [ 15 ], SCN3A [ 16 ], SCN8A [ 17 ] and GRIN2B [ 18 ] genes. Nowadays, the prevalence of CVI in patients with DEEs, regardless of genetic diagnosis, is unknown. A quantitative summary of the existing data on the prevalence rates of this condition would aid in comprehending the extent of the problem, outlining future research, and suggesting the need for therapeutic strategies for early identification and prevention of the disorder. Early identification allows the implementation of “early intervention” programs necessary to address difficulties already emerging as risk conditions for neuro-developmental disorders during “critical periods” of neuronal plasticity [ 19 ]. Cortical circuits show a maximum sensitivity to sensory stimuli induced by experience in the postnatal period [ 20 ] compared to adulthood. Exposure to an “enriched environment”, as occurs in early neuro-rehabilitative intervention, stimulates axonal plasticity and synaptic reorganization [ 21 ] and has been shown to accelerate the development of the visual system [ 22 , 23 ]. In this theoretical framework, the quantitative analysis of the prevalence rate of CVI in patients with a diagnosis of DEEs, according to the ILAE classification [ 1 ], is therefore necessary. A preliminary search for previous systematic reviews was conducted in the Cochrane Library, PubMed and PROSPERO.

This systematic review aims to describe the prevalence of Cerebral Visual Impairment (CVI) among patients with a diagnosis of Developmental and Epileptic Encephalopathies (DEEs) according to the 2021 International League Against Epilepsy (ILAE) classification [ 1 ].

The proposed systematic review will address the following questions:

What is the prevalence of CVI among patients with DEEs?

What study methodological characteristics explain the heterogeneity in results?

This study followed the PRISMA-P statement [ 24 ] for systematic review and meta-analysis protocols and was registered in the International Prospective Register of Systematic Reviews (PROSPERO) network [ 25 ]. The JBI Manual for Evidence Synthesis (Systematic Reviews of Prevalence and Incidence) [ 24 ] will be used for the review [ 26 ].

Inclusion criteria

We will use the condition, context and population framework (CoCoPop) for the systematic review of prevalence and incidence to formulate the eligibility criteria [ 27 ].

Condition: CVI must have been diagnosed and examined by a physician in clinical studies with an objective neuro-visual assessment. The diagnosis of CVI is indicated for children showing abnormal visual responses that cannot be attributed to the eyes themselves. Despite intense stimulation, a child may not be able to fixate and follow, and his/her reaction to faces is abnormal [ 2 , 3 , 4 ].

Context: there will be no restrictions by type of setting.

Population: We will include clinical studies examining patients with Developmental and Epileptic Encephalopathies (DEE) of broad genetic aetiologies. There will be no restrictions based on sex, age, race/ethnicity, or geographic region. DEEs described in eligible clinical studies must have been diagnosed by a physician based on the criteria from the ILAE Epilepsy Diagnosis.org Task Forces [ 1 ]. DEEs are defined as diseases where there is a developmental impairment related to both the underlying aetiology independent of epileptiform activity and epileptic encephalopathy. We will include studies involving patients with “Early Infantile DEE” with onset under 3 months of age and other syndromes which either typically present after 3 months of age or have a spectrum of onset encompassing early and late infancy.

Studies: We will include all completed publications reporting the assessment of CVI in patients with DEEs in clinical (observational, cohort studies, cross-sectional studies, retrospective studies) and pre-clinical (in vivo) studies.

Outcome measure: the primary outcome will be the prevalence of CVI indicating the number of people with DEEs that have the disorder at a given point in time. The secondary outcome will be the prevalence of a specific genetic mutation in the group of patients with DEEs and associated CVI, by calculating the number of patients with a specific genetic diagnosis of DEEs and CVI divided by the total number of patients with DEE and CVI.

Language: We will include articles reported in English and Italian.

Search strategy

Comprehensive literature searches of electronic bibliographic databases will be conducted. The specific search strategies will be created by a Health Sciences Librarian with expertise in systematic review searching using Medical Subject Headings (MeSH) and text words related to CVI and DEEs. An independent librarian, not associated with the project, will peer-review the MEDLINE strategy developed by the project team. A draft search strategy for PubMed is provided in Additional file 1. We will search MEDLINE, EMBASE, Science Direct, Scopus, PsychINFO, Web of Science, Wiley and Highwire Press and Cochrane Library of Systematic Reviews. No time restrictions will be placed on the date of publication. Upon completion, identified citations will be exported to a cloud-based citation manager for study selection. A final grey literature search will be conducted on medical books and reports from experts, as well as a review of a trial register for any ongoing and unpublished studies. Further, to ensure literature saturation we will scan the reference lists of included studies or relevant reviews identified through the search. Duplicate citations will be removed. The search strategies will be updated until the end of the review.

Study selection

All records will be independently assessed by two reviewers and reported using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flow diagram. Following the initial search, titles and abstracts of articles will be screened for eligibility. Second, full texts will be reviewed. As a final step, references will be manually searched for all articles considered to identify relevant reports that were missed in the search strategy. A discussion will be conducted between the reviewers in case of disagreements.

Data collection process

A data extraction form will be designed to extract equivalent information from each study report. From each eligible study, data will be extracted independently and in duplicate by two reviewers. Before starting the review, calibration exercises will be conducted to ensure consistency across reviewers. When data are ambiguous or missing from the published study, we will contact the corresponding authors of the included studies to obtain any key information. Furthermore, we will discuss the potential impact of missing data as a limitation. Data extraction will be independently cross-checked.

Data collection will include the following items:

Study Details :

Reviewer: details and ID of the primary reviewer

Study ID/ Record number

Date when the data extraction will be filled

Study title: full title of the study

Author’s name,

Year of publication

Journal in which the article is published

Study method :

Aims of the study

Study design (cross-sectional. Cohort, or randomized control trial)

Setting (hospital-or community-based)

Follow-up or study duration for cohort studies and clinical trials

Study population: sample size, mean or median age, age range, sex ratio, inclusion and exclusion criteria of participants

Primary outcome: CVI

Secondary outcome: genetic diagnosis DEEs

Covariates : method used to assess CVI, mean or median age at diagnosis of DEEs, proportion of patients without CVI, acquired neurodevelopmental milestones, developmental quotient (DQ) and Intellectual Quotient (IQ).

Prevalence estimates (e.g. number of subjects with the disorder, proportion and 95% confidence interval), where prevalence is not directly reported and is feasible, it will be calculated using reported case numbers and sample sizes in individual studies

Prevalence estimates of genetic diagnosis of DEEs and CVI will be calculated using reported case numbers divided by the total sample size

Author’s comments

Reviewer comments.

Risk of bias assessment

The “JBI Critical Appraisal Checklist for Studies reporting prevalence data” [ 27 ] conceived by the JBI research organization based in the Faculty of Health and Medical Sciences at the University of Adelaide, South Australia will be used to assess the risk of bias in prevalence studies on selected articles. The tool includes 9 questions and the overall appraisal (include, exclude, seek further info). Quality assessment will be undertaken by two reviewers independently. The reviewers will then discuss the results of the critical appraisal for the final appraisal. Disagreements will be resolved by discussion, and a third reviewer may be required.

Data synthesis and meta-analysis

Investigation of heterogeneity.

Heterogeneity between studies will be assessed using Cochran’s Q statistic ( p  > 0.05). In addition, the I 2 statistic will be used to measure the percentage of inter-study variability [ 28 ]. The value of I 2 will be classified as small if 0 < I 2  < 25%, medium if 25% < I 2  ≤ 50%, and large if I 2  > 50% [ 28 ]. The category of the I 2 statistic will determine whether a meta-analysis is possible.

Characteristics of included studies will be presented in summary tables and narrative text. In expectation of prevalence varying between studies and populations, pooled prevalence estimates for the prespecified outcomes of interest will be calculated by applying a random-effects model [ 29 ]. The results will be presented graphically in a forest plot. R software version 3.6.1 (R Core Team, Vienna, Austria) will be used to combine data, along with 95% confidence intervals (95% CI).

If the I 2 is large, then a meta-analysis will be considered not possible, and a narrative qualitative summary will be done. The narrative description will include a presentation of the quantitative data reported in individual studies, along with the point and interval estimates for the effects, where available. Otherwise, a meta-analysis will be deemed feasible.

Additional analyses

If more than 10 studies are included in the quantitative synthesis, the potential sources of heterogeneity will be investigated by subgroup and meta-regression analyses [ 29 , 30 ]. The potential effect modifiers considered will be the following: genetic diagnosis of DEEs, child neurodevelopment, DQ or IQ, or neurodevelopmental regression, seizure onset, type of studies (observational vs experimental), and type of CVI assessments.

We will use the model F value and its statistical significance to assess whether there is evidence for an association between any of the covariates and the outcome; all covariates with p -value < 0.1 in bivariate models will be added to the multivariable model, in which a p -value < 0.05 will be considered statistically significant. The model fit will be assessed using the proportion of the between-study variance explained by the covariates (adjusted R2) [ 31 ]. To control for the risk of type I error when performing meta-regression with multiple covariates, we will perform Monte Carlo permutation tests to calculate P values adjusted for type 1 error and we will check if there is a change in statistical significance [ 32 ].

Meta-bias(es)

A. publication bias across studies.

If 10 or more eligible studies are found, the symmetry of the funnel chart will be used to assess publication bias, supplemented by quantitative analysis using Egger’s test. The test represents a regression analysis in which the precision of each included study is defined as the independent variable, while the ratio between its effect size and its standard error is the dependent variable. If the test is not statistically significant, it is possible to reject the hypothesis in favour of the presence of a publication bias [ 33 ].

B. Sensitivity analyses

The robustness of the results will be assessed by performing sensitivity analyses to measure the impact of low-quality studies (identified through the risk of bias). Low-quality studies will be removed one by one and the meta-analysis will be rerun. We will then compare the results of meta-analyses with and without assessed studies, also considering the study sample size, the strength of evidence, and the impact on aggregated effect size. However, if all included studies are at high risk of bias, no sensitivity analysis will be performed.

Confidence in cumulative estimate

Grade assessment.

The quality of evidence for all outcomes will be judged using the Grading of Recommendations Assessment Development and Evaluation (GRADE) working group methodology [ 34 ] as suggested in the literature study on conducting systematic reviews of the literature on the prevalence of a given pathology in a category of individuals [ 35 ]. The quality of evidence will be assessed in all areas of risk of bias. Additional domains may be considered where appropriate. Quality will be adjudicated as high, moderate, low or very low [ 36 , 37 ].

The systematic review and meta-analysis presented in this protocol will identify, collect, evaluate and integrate the epidemiological knowledge underlying the prevalence of CVI in patients with DEEs. We are not aware of another systematic review and meta-analysis addressing the specific issue. In our opinion, this systematic review will fill the gap by estimating the pooled global prevalence of CVI in DEE patients useful for understanding the extent of the problem, outlining future research, and suggesting the need for early identification strategies.

The results of this study will be of interest to multiple audiences, including patients, their families, caregivers, clinicians, researchers, scientists, and policymakers.

Scientific communities can better understand how and what to implement in protocols and intervention programs for patients with DEEs by having objective data on the prevalence of this disorder. In addition, this may be useful for the creation of neuro-visual assessment protocols to be used in clinical practices and to incorporate patients into neuro-rehabilitation programs (early intervention) as soon as possible.

Strengths and limitations

The intended systematic review and meta-analysis will fill the knowledge gap on the prevalence of CVI in patients with DEEs. The eligible studies will be identified through a methodical literature search followed by a rigorous screening process; we will then use robust meta-analysis tools to pool the data and provide reliable estimates of the global prevalence of CVI in DEE patients. We anticipate that we will identify knowledge gaps to be filled by new epidemiological research considering that the prevalence of CVI in patients with DEEs has been poorly covered in the literature. In this regard, implications for future epidemiological research will be discussed in the final manuscript.

Conclusions

The purpose of this systematic review is to provide evidence supporting or refuting the hypothesis that CVI is prevalent in a large percentage of patients with DEEs, regardless of genetic diagnosis.

Overall, the review will complement the evidence base on the causes of developmental and epileptic encephalopathies. Similarly, it can provide scientific evidence for a neurovisual assessment protocol that can be validated and then proposed to epilepsy clinics and paediatric neurological departments.

Thus, a patient can be included in an “early intervention” program to prevent and support neuro and psychomotor development, as well as in a precision medicine program to prevent/treat epileptic seizures at the onset.

Availability of data and materials

Not applicable.

Abbreviations

CDKL5 Developmental and Epileptic Encephalopathies

Condition, Context and Population framework

Cerebral Visual Impairment

Developmental and Epileptic Encephalopathies

Developmental Quotient

Grading of Recommendations Assessment Development and Evaluation

International League Against Epilepsy

Intellectual Quotient

Medical Subject Headings

Preferred Reporting Items for Systematic Reviews and Meta-analyses

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Acknowledgements

This work was developed within the Framework of the DINOGMI Department of Excellence of MIUR 2018-2022 (legge 232 del 2016). Research supported by PNRR-MUR-M4C2 PE0000006 Research Program “MNESYS”—A multiscale integrated approach to the study of the nervous system in health and disease. IRCCS ‘G. Gaslini’ is a member of ERN-Epicare.

The open publication fee was paid by funding 'HUMANITAS MIRASOLE SPA - NET2019' granted to PS.

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Martina Giorgia Perinelli, Ganna Balagura, Antonella Riva & Pasquale Striano

IRCCS Istituto Giannina Gaslini, Genoa, Italy

Elisabetta Amadori & Pasquale Striano

Department of Neurology, Children’s Hospital Colorado, Aurora, CO, USA

Megan Abbott & Scott Demarest

Department of Pediatrics, University of Colorado at Denver, Aurora, CO, USA

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M.G.P, M.A conceived and designed the analysis and developed the theoretical framework. M.G.P wrote the protocol. A.R, G.B contributed to the design and implementation of the protocol. M.S.V, E.A worked on the manuscript. S.D, A.V, P.S supervised the project. All authors read and approved the final manuscript.

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Correspondence to Pasquale Striano .

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Perinelli, M.G., Abbott, M., Balagura, G. et al. Prevalence of cerebral visual impairment in developmental and Epileptic Encephalopathies: a systematic review protocol. Syst Rev 13 , 223 (2024). https://doi.org/10.1186/s13643-024-02638-6

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DOI : https://doi.org/10.1186/s13643-024-02638-6

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Data management in biobanking: strategies, challenges, and future directions.

1. Introduction

2. biospecimens, 2.1. importance of biospecimens, 2.2. types of biospecimens.

• Blood samples: Blood plays a crucial role in the body, transporting oxygen, nutrients, hormones, and waste products. Obtained through procedures like venipuncture or finger pricking, blood samples are rich in information, containing details like blood cell counts, biochemical markers, hormones, and genetic material (DNA and RNA). They are utilized across various medical fields for diagnostics, disease tracking, and research endeavors.
• Tissue biopsies: Tissue biopsies involve extracting small tissue samples from organs or lesions for microscopic examination. These samples provide vital diagnostic insights, enabling pathologists to identify cellular irregularities, tissue structures, and molecular markers associated with conditions such as cancer, infections, and autoimmune disorders. Techniques like needle biopsies, surgical excision, and endoscopic procedures are employed to obtain tissue biopsies.
• Saliva and oral swabs: Saliva and oral swabs contain a mix of cells, enzymes, proteins, and microorganisms that are present in the oral cavity. These specimens are collected non-invasively and are employed to study oral health, detect oral pathogens, and analyze the oral microbiome. Saliva samples also offer insights into systemic conditions like diabetes, cardiovascular disease, and autoimmune disorders. Oral swabs find utility in genetic testing and forensic analysis.
• Urine samples: Urine, a waste product produced by the kidneys, holds metabolic byproducts, electrolytes, hormones, and other substances filtered from the blood. Routinely collected for urinalysis, urine samples help evaluate the kidney function, hydration status, and presence of abnormalities such as urinary tract infections, kidney stones, and proteinuria. They are also utilized in drug screening, pregnancy testing, and research studies.
• Stool samples: Stool, or feces, is the waste product expelled from the gastrointestinal tract. Stool samples contain undigested food, water, bacteria, viruses, and other substances. Collected for diagnostic purposes, they help detect gastrointestinal infections, evaluate digestive function, and screen for colorectal cancer. Stool samples are also used to explore the gut microbiome, digestive disorders, and inflammatory bowel diseases.

3. Data Types in Biobanking

3.1. clinical data, 3.2. image data.

• Histopathological images: Histopathological images capture tissue samples stained with diverse dyes to visualize cellular structures and arrangements. These images are pivotal in disease diagnosis, tumor evaluation, and prognostic assessment. Biobanks maintain archives of histopathological slides alongside detailed clinical annotations, empowering researchers to correlate histological characteristics with molecular profiles and clinical outcomes.
• Medical imaging: Medical imaging encompasses a plethora of techniques including MRI, CT scans, PET scans, ultrasound, X-rays, and thermal imaging, facilitating the non-invasive visualization of anatomical structures, physiological activities, and pathological changes in living organisms. Biobanks curate repositories of medical imaging data obtained from routine clinical procedures, research studies, and clinical trials, enabling retrospective analyses and longitudinal investigations across diverse patient cohorts [ 19 , 20 ].
• Microscopy images: Microscopy images capture intricate cellular and subcellular structures with remarkable resolution, providing insights into cellular morphologies, spatial organizations, and dynamic processes. Biobanks preserve microscopy images that are acquired through various techniques such as light microscopy, electron microscopy, and confocal microscopy, supporting research endeavors in fields such as cell biology, neuroscience, and developmental biology. These images facilitate quantitative analyses of cellular phenotypes, protein distributions, and cellular interactions in both healthy and diseased states.

3.3. Omics Data

• Genomic data, encapsulating DNA sequences, variations, and structural nuances, constitute an indispensable facet of biobanking. Driven by advances in high-throughput sequencing technologies, biobanks house diverse genomic datasets spanning entire genomes, exomes, and genotyping arrays. These datasets facilitate genome-wide association studies (GWASs), variant exploration, and pharmacogenomic investigations, with the integration of genomic data and clinical insights holding promise for deciphering genotype–phenotype relationships and guiding tailored treatment approaches.
• Transcriptomic data: Transcriptomic data capture the expression profiles of genes under various biological conditions, unraveling intricate cellular processes and regulatory networks. Biobanks curate transcriptomic datasets derived from methodologies like microarrays and RNA sequencing (RNA-seq), enabling researchers to probe gene expression patterns linked to disease states, tissue phenotypes, and therapeutic responses. Transcriptomic analyses of biobanked specimens drive biomarker discovery, target identification, and mechanistic inquiries across diverse domains spanning oncology to neurology.
• Proteomic data: Proteomic data entail the identification and quantification of proteins within biological samples, offering a snapshot of their cellular functions and signaling pathways. Biobanks store proteomic datasets derived from mass spectrometry-based techniques, immunoassays, and protein arrays, facilitating the characterization of protein expression, modifications, and interactions. The integration of proteomic insights with other omics layers enriches our understanding of disease mechanisms, biomarker profiles, and treatment responses, thereby paving the way for precise therapeutic interventions.
• Metabolomic data: Metabolomic data capture the repertoire of small-molecule metabolites within biological samples, serving as mirrors of cellular metabolism and biochemical pathways. Biobanks archive metabolomic profiles obtained using methodologies like nuclear magnetic resonance (NMR) spectroscopy and liquid chromatography–mass spectrometry (LC-MS), enabling investigations into metabolic dysregulations across diseases such as cancer, metabolic disorders, and neurodegenerative conditions. The integration of metabolomic signatures with other omics datasets furnishes holistic insights into disease phenotypes and metabolic imbalances underpinning health and disease.

4. Challenges in Data Management

4.1. data heterogeneity.

• Diverse data types: Biobanks collect a wide range of biological samples, including tissues, blood, urine, and cells, each with its unique characteristics and properties. Furthermore, the associated data encompass a wide range of data types, including genomic data, clinical records, imaging data, and information on environmental exposure. Managing such diverse datasets requires robust systems capable of handling multiple data formats, structures, and standards [ 26 ].
• Varying data standards: Different biobanks may adhere to varying data standards, terminology, and annotation protocols, leading to inconsistencies in data representation and interoperability challenges. Harmonizing data across multiple biobanks and research studies becomes inherently challenging due to the lack of standardized practices for data collection, annotation, and storage.
• Data annotation and metadata: Effective data management relies on accurate metadata annotation to provide context and interpretability to the stored data. However, the heterogeneity of data sources often results in incomplete or inconsistent metadata, making it challenging to interpret and analyze the data accurately. Standardizing metadata annotation practices is essential for ensuring data integrity and facilitating data integration across different biobanks and research projects.
• Integration and interoperability: Integrating heterogeneous datasets from multiple sources is crucial for conducting comprehensive analyses and deriving meaningful insights. However, data heterogeneity complicates the integration process, requiring sophisticated data integration methods and tools to reconcile the differences in data formats, semantics, and ontologies. Achieving interoperability across disparate datasets is essential for promoting data sharing and collaboration in the scientific community.
• Data quality and reliability: Heterogeneous data sources may vary in quality, completeness, and reliability, posing challenges for ensuring data accuracy and consistency. Quality control measures must be implemented throughout the data lifecycle to identify and rectify errors, outliers, and inconsistencies. Data validation, cleaning, and normalization techniques are essential for maintaining data quality and reliability, particularly in large-scale biobanking initiatives.
• Ethical and legal considerations: Data heterogeneity also extends to ethical and legal considerations surrounding data privacy, consent, and ownership. Harmonizing ethical standards and regulatory requirements across different jurisdictions is essential to ensure adherence to data protection regulations like GDPR and HIPAA.

4.2. Data Quality Assurance

• Sample integrity and traceability: Biobanks must maintain the integrity and traceability of biological samples throughout their lifecycle, from collection to storage and distribution. Ensuring proper sample handling, storage conditions, and chain-of-custody protocols is crucial for preventing sample degradation, contamination, or mislabeling, which could compromise data quality and research outcomes.
• Data accuracy and consistency: The data collected and curated in biobanks must be accurate, consistent, and reliable to support meaningful research conclusions. However, data entry errors, inconsistencies in data annotation, and discrepancies between different data sources can introduce inaccuracies and biases into the dataset. Implementing data validation checks, standardizing data entry procedures, and conducting regular data audits are imperative for upholding data accuracy and consistency.
• Missing data and incomplete records: Incomplete or missing data entries are common challenges in biobanking, where data may be unavailable or incomplete due to various reasons such as sample collection limitations, participant non-compliance, or data entry errors. Addressing missing data requires robust data imputation techniques and strategies for data completeness assessment. Additionally, establishing protocols for documenting missing data and mitigating its impact on research outcomes is essential for maintaining data quality.
• Data reconciliation and harmonization: Biobanks often aggregate data from multiple sources, including clinical records, laboratory measurements, and genetic analyses. Reconciling and harmonizing heterogeneous data sources to ensure consistency and interoperability pose significant challenges. Establishing standardized data formats, vocabularies, and ontologies, along with data normalization and transformation techniques, is essential for integrating diverse datasets while maintaining data quality.
• Quality control processes: Implementing rigorous quality control processes is crucial for identifying and rectifying data errors, outliers, and inconsistencies. Quality control measures might encompass data validation checks, data cleaning procedures, and outlier detection algorithms, all aimed at ensuring the integrity and reliability of the data. Regular quality assessments and audits help monitor data quality over time and ensure adherence to established quality standards.
• Long-term data preservation: Preserving data integrity and accessibility over the long term presents a considerable challenge for biobanks, particularly as technology and data formats evolve over time. Establishing robust data stewardship and preservation strategies, including data backup, version control, and migration plans, is essential for safeguarding data integrity and ensuring their longevity for future research endeavors.
• Ethical and regulatory compliance: Data quality assurance in biobanking needs to adhere to ethical principles and regulatory requirements governing participant privacy, consent, and data protection. Implementing data governance frameworks, privacy safeguards, and security measures is essential for compliance with legal and ethical guidelines such as GDPR [ 27 ] and HIPAA while maintaining data quality and integrity.

4.3. Privacy and Security

• Participant confidentiality: Biobanks hold considerable amounts of data containing sensitive information about participants, including personal identifiers, medical histories, and genetic profiles. Ensuring participant confidentiality and protecting privacy rights are fundamental ethical principles in biobanking. However, the amount and diversity of the data increase the risk of unintended disclosures or privacy breaches, necessitating robust privacy safeguards and access controls.
• Encryption and access management: Deploying robust encryption protocols and access management systems is crucial for safeguarding biobank data against unauthorized access or breaches. Encryption methods like data-at-rest and data-in-transit encryption serve to secure data both during storage on servers and while they are being transmitted. Access management strategies, such as role-based access control (RBAC) and multi-factor authentication (MFA), limit access solely to authorized individuals, thereby reducing the potential for insider threats.
• Data anonymization and de-identification: Anonymizing or de-identifying data represents a prevalent approach in biobanking, aiming to safeguard participant privacy while retaining data usefulness for research endeavors. However, achieving true anonymity or irreversibility poses challenges, as re-identification risks remain, especially with the proliferation of data linkage and re-identification techniques. Balancing data anonymization with data utility requires the careful consideration of anonymization methods and privacy-preserving techniques.
• Data sharing and consent management: Facilitating data sharing while respecting participant consent preferences is a complex undertaking in biobanking. Ensuring that participants have meaningful control over their data and understanding how their data will be used is essential for fostering trust and transparency. Implementing robust consent management systems, including dynamic consent models and granular consent options, enables participants to specify their preferences regarding data sharing and use.
• Regulatory compliance: Biobanking data management must comply with a myriad of legal and regulatory requirements governing data privacy and security, including General Data Protection Regulation (GDPR) [ 28 ], Health Insurance Portability and Accountability Act (HIPAA) [ 29 ], and other data protection laws. Adhering to regulatory standards requires implementing comprehensive data governance frameworks, conducting privacy impact assessments, and maintaining documentation of data processing activities. Failure to comply can lead to significant penalties and harm to the reputation of biobanks.
• Data breach preparedness and response: Despite best efforts to prevent breaches, biobanks need to be ready to react promptly and efficiently in case of a data breach. Establishing incident response plans, including procedures for breach notification, forensic investigation, and communication with affected parties, is crucial for mitigating the impact of breaches on participant privacy and trust.
• Data lifecycle management: Ensuring the effective management of data from its collection to disposal necessitates the implementation of robust data management practices that prioritize privacy and security. Implementing data minimization strategies, secure data disposal procedures, and audit trails for data access and usage enhances accountability and mitigates the risk of unauthorized data exposure

4.4. Data Governance and Regulatory Compliance

• Legal and ethical frameworks: Biobanks operate within a framework of legal and ethical guidelines that govern the collection, storage, and use of biological samples and their associated data. Adherence to regulations like the GDPR and HIPAA as well as the ethical principles outlined in documents like the Declaration of Helsinki are prerequisites for the protection of participant rights and ensuring research integrity.
• Informed consent and participant privacy: Obtaining informed consent from participants is a cornerstone of ethical biobanking practices, guaranteeing that individuals comprehend the objectives of data collection, the intended utilization of their data, and any potential risks inherent in the process [ 4 ]. However, obtaining meaningful consent can be challenging, especially in longitudinal studies or when data may be used for future, unforeseen research purposes. Balancing participant autonomy with the need for scientific advancement requires clear communication and consent management strategies.
• Data ownership and intellectual property: Elucidating rights to data ownership and addressing intellectual property concerns is essential for resolving legal and ethical issues surrounding data usage, access, and commercialization. Biobanks often navigate complex relationships between participants, researchers, institutions, and commercial entities, necessitating clear policies and agreements regarding data ownership, sharing, and commercialization rights.
• Data access and sharing policies: Establishing transparent data access and sharing policies is essential for promoting research collaboration, maximizing data utility, and ensuring equitable access to biobank resources. However, balancing openness with privacy concerns and intellectual property rights poses challenges, particularly when sharing data across international borders or with commercial partners. Implementing access control mechanisms and data use agreements helps regulate data access while protecting participant privacy and confidentiality.
• Data security and confidentiality: Protecting the security and confidentiality of biobank data is a legal and ethical imperative, requiring robust data security measures and safeguards against unauthorized access or breaches. Adhering to data protection regulations like GDPR and HIPAA entails implementing encryption, access controls, and data anonymization techniques to mitigate privacy risks and safeguard participant confidentiality.
• Audit and compliance monitoring: Monitoring compliance with data governance policies and regulatory requirements requires robust audit mechanisms and oversight processes. Conducting regular audits of data management practices, documentation, and security controls helps identify potential compliance gaps and mitigate risks of non-compliance. Establishing clear lines of accountability and oversight responsibilities is essential for ensuring adherence to regulatory standards.
• Data retention and disposal: Developing policies for data retention and disposal is essential for effectively managing the data lifecycle and minimizing privacy risks. Determining appropriate retention periods, archival strategies, and secure data disposal procedures requires the consideration of legal requirements, research needs, and participant consent preferences. Implementing data minimization principles and regular data purging practices reduces the risk of unauthorized data exposure and facilitates compliance with data protection laws.

5. Strategies for Effective Data Management

5.1. standardization and metadata annotation.

• Data standardization: Standardizing data formats, vocabularies, and ontologies is essential for ensuring consistency and interoperability across the diverse datasets collected and stored in biobanks [ 30 ]. With the adoption of common data standards and terminologies, biobanks facilitate data sharing, integration, and reusability across multiple research studies and platforms [ 31 , 32 ]. Standardization efforts encompass various aspects of data management, including sample metadata, clinical annotations, genomic data formats, and laboratory measurements [ 33 , 34 ].
• Harmonization of data: Harmonizing heterogeneous datasets from different sources involves reconciling the differences in data formats, semantics, and structures to enable seamless data integration and analysis. Harmonization efforts aim to ensure that the data collected across multiple biobanks or research studies are compatible and comparable, thereby maximizing the utility of aggregated datasets for research purposes. Establishing harmonization guidelines, mapping protocols, and data transformation procedures helps address discrepancies and inconsistencies in data representation [ 35 ].
• Metadata annotation: Metadata annotation provides essential context and descriptive information about biological samples and their associated data, enhancing data interpretability and usability. Metadata encompass a wide range of attributes, including sample characteristics, experimental protocols, data provenance, and quality metrics. Annotating data with standardized metadata terms and controlled vocabularies enables researchers to search, filter, and analyze data effectively, facilitating data discovery and interpretation [ 36 , 37 ].
• Data integration platforms: Leveraging data integration platforms and bioinformatics tools streamlines the process of harmonizing and annotating heterogeneous datasets in biobanking. These platforms provide capabilities for data mapping, transformation, and enrichment, enabling researchers to aggregate, query, and analyze diverse datasets from multiple sources. By providing a unified interface for data access and analysis, data integration platforms promote collaboration, accelerate research discoveries, and maximize the value of biobank resources [ 38 ].
• Ontology development and adoption: Ontologies play a crucial role in standardizing and formalizing knowledge representation in biobanking, enabling semantic interoperability and data integration [ 39 ]. Ontologies provide structured vocabularies and hierarchical relationships for annotating biological concepts, phenotypic traits, and experimental variables [ 40 ]. Adopting community-developed ontologies, such as the Human Phenotype Ontology (HPO) or the Experimental Factor Ontology (EFO), facilitates data annotation and enhances data interoperability across different biobanks and research domains.
• Metadata quality assurance: Ensuring the quality and completeness of metadata annotations is essential for maintaining data integrity and facilitating accurate data interpretation. Metadata quality assurance measures include validation checks, consistency audits, and adherence to metadata standards and best practices. Establishing metadata curation guidelines, metadata validation rules, and quality control procedures helps mitigate errors and inconsistencies in metadata annotations, enhancing the reliability and usability of biobank data.
• Community engagement and collaboration: Collaborative efforts within the scientific community are crucial for driving standardization and metadata annotation initiatives in biobanking. Engaging stakeholders, including researchers, data scientists, informaticians, and domain experts, fosters consensus building, promotes knowledge sharing, and accelerates the adoption of standardized data management practices. Community-driven initiatives, such as data standards consortia, working groups, and data harmonization projects, play a vital role in advancing data standardization and metadata annotation efforts across the biobanking community.

5.2. Data Quality Control

• Data validation: Data validation verifies the data’s accuracy, consistency, and integrity through systematic checks and predefined criteria. These checks, conducted at data entry or import, identify errors, anomalies, and inconsistencies such as missing values or outliers, ensuring only high-quality data are inputted into the system.
• Quality assurance protocols: Developing quality assurance protocols and standard operating procedures (SOPs) are essential for the maintenance of consistent data quality standards across biobank operations. SOPs define procedures for data collection, storage, curation, and documentation, ensuring adherence to best practices and regulatory requirements. Regular training and audits help enforce compliance with quality assurance protocols and identify areas for improvement.
• Data cleaning and transformation: Data cleaning addresses errors, inconsistencies, and outliers in the dataset to enhance data quality and reliability. Cleaning procedures may include data deduplication, outlier detection, imputation of missing values, and normalization of data formats. Data transformation techniques, such as standardization or log transformation, help prepare data for analysis and mitigate biases introduced by data heterogeneity.
• Standardized data entry and documentation: Standardizing data entry procedures and documentation formats promotes consistency and accuracy in data collection and annotation. Providing clear guidelines, data dictionaries, and templates for data entry facilitates uniform data capture and ensures that relevant metadata are documented consistently [ 41 , 42 ]. Validating data against predefined data standards and vocabularies further enhances data quality and interoperability.
• Automated quality control checks: Implementing automated quality control checks and algorithms helps streamline data validation and cleaning processes, reducing manual effort and human errors. Automated checks may include range validation, format validation, and logical consistency checks to flag potential data anomalies in real time. Integrating automated quality control checks into data management workflows improves efficiency and ensures timely detection and resolution of data issues.
• Continuous monitoring and improvement: Data quality control is an ongoing process that requires continuous monitoring and enhancement to maintain data integrity over time. Monitoring data quality metrics like data completeness, accuracy rates, and error frequencies allows biobanks to evaluate the effectiveness of quality control measures and identify areas for optimization. Establishing feedback mechanisms and quality improvement initiatives fosters a culture of continuous quality improvement and enhances the reliability of biobank data.
• External quality assessment programs: Participating in external quality assessment programs and proficiency testing schemes provides independent validation of data quality and performance against established benchmarks and standards. External assessments help benchmark biobank performance, identify areas for improvement, and demonstrate compliance with regulatory requirements and accreditation standards. Engaging in collaborative quality assurance initiatives strengthens the credibility and trustworthiness of biobank data within the scientific community.

5.3. Secure Data Infrastructure

• Data encryption: Deploying strong encryption methods for data, both at rest and in transit, serves to protect biobank data from unauthorized access or interception. Encryption standards such as the Advanced Encryption Standard (AES) for data storage and Transport Layer Security (TLS) for data transmission ensure that data remain encrypted and indecipherable to unauthorized parties, thus mitigating the risk of data breaches or interception during transmission.
• Access control and authentication: Establishing policies for access control and authentication mechanisms is essential in governing access to biobank data, ensuring that only authorized personnel can access sensitive information. Role-based access control (RBAC), multi-factor authentication (MFA), and stringent password policies serve to limit access to data based on user roles, privileges, and authentication credentials, thereby reducing the risk of unauthorized data access or insider threats.
• Data segregation and isolation: The segregation and isolation of sensitive data within secure environments, such as secure servers or dedicated data centers, help to thwart unauthorized access or tampering with biobank data. The implementation of network segmentation, firewalls, and intrusion detection systems (IDSs) effectively separates sensitive data from less secure networks, minimizing the impact of security breaches or cyberattacks on biobank operations.
• Secure data storage and backup: Employing secure data storage solutions, such as encrypted databases or cloud storage with integrated encryption and access controls, serves to safeguard biobank data from loss, theft, or corruption. Regular data backups and comprehensive disaster recovery plans ensure data resilience and enable swift data recovery in the event of hardware failures, natural disasters, or ransomware attacks, thereby minimizing downtime and potential data loss.
• Data masking and anonymization: Applying data masking or anonymization techniques to sensitive data helps protect participant privacy and confidentiality while preserving data utility for research purposes. Masking personally identifiable information (PII) or de-identifying data before sharing or analysis reduces the risk of re-identification and unauthorized disclosure of sensitive information, ensuring compliance with privacy regulations and ethical guidelines.
• Auditing and monitoring: Integrating robust auditing and monitoring mechanisms empowers biobanks to monitor data access, usage, and modifications, facilitating accountability and compliance with data governance policies. Audit trails, logging mechanisms, and real-time monitoring tools offer visibility into data activities and aid in detecting anomalous behavior or security incidents, enabling prompt response and remediation.
• Security awareness and training: Promoting security awareness and providing training to personnel on security best practices, data handling procedures, and incident response protocols is crucial for fostering a culture of security within the biobank. Educating staff about potential security risks, phishing attacks, and social engineering tactics helps mitigate human errors and strengthens defenses against cybersecurity threats, enhancing overall data security posture.
• Regulatory compliance and certifications: Ensuring compliance with regulatory requirements, such as GDPR, HIPAA, and ISO/IEC 27001 [ 9 ], demonstrates commitment to data security and privacy best practices. Obtaining certifications and undergoing independent audits validate a biobank’s adherence to industry standards and regulatory guidelines, instilling confidence in data security practices among stakeholders, researchers, and participants.

5.4. Data Sharing and Collaboration

• Promoting open data sharing: Embracing a culture of open data sharing facilitates transparency, reproducibility, and innovation in biomedical research [ 44 ]. Biobanks can promote open data sharing by adopting data-sharing policies, releasing datasets to public repositories, and adhering to data sharing mandates from funding agencies or regulatory bodies. Open data sharing fosters collaboration, accelerates scientific progress, and increases the impact of research findings by enabling broader access to biobank resources.
• Establishing data access policies: Developing clear and transparent data access policies helps regulate access to biobank data while balancing privacy concerns, data governance requirements, and research needs [ 45 ]. Data access policies outline procedures for requesting, accessing, and sharing data, specifying eligibility criteria, data use restrictions, and compliance requirements. Implementing access control mechanisms, such as data use agreements and data access committees, ensures that data are accessed and used responsibly and ethically.
• Creating collaborative platforms: Establishing collaborative platforms and data-sharing portals facilitates communication, collaboration, and data exchange among researchers, biobanks, and other stakeholders. Collaborative platforms provide centralized access to data, tools, and resources, enabling researchers to discover, access, and analyze biobank data efficiently [ 46 ]. These platforms may include data repositories, virtual research environments, or collaborative networks tailored to specific research domains or disease areas.
• Data harmonization and integration: Harmonizing and integrating heterogeneous datasets from multiple biobanks or research studies enhances data interoperability and facilitates cross-study comparisons and meta-analyses. Collaborative efforts to standardize data formats, metadata annotations, and ontologies streamline data integration processes and enable researchers to aggregate, analyze, and interpret data from diverse sources effectively. Data harmonization initiatives promote data reuse, reduce redundancy, and maximize the value of biobank resources for research [ 3 ].
• Facilitating data-sharing agreements: Negotiating data-sharing agreements and collaborations with external partners, including academic institutions, industry partners, and international consortia, expands research opportunities and promotes knowledge exchange [ 47 ]. Data-sharing agreements delineate the terms and conditions governing data sharing, including data ownership, intellectual property rights, and data use restrictions, ensuring that data are shared responsibly and in compliance with legal and ethical requirements [ 48 ].
• Enabling federated data analysis: Federated data analysis approaches enable collaborative analysis of distributed datasets across multiple biobanks or research sites while preserving data privacy and security. Federated analysis platforms facilitate data aggregation, analysis, and knowledge discovery without centrally pooling or sharing sensitive data. By leveraging federated analysis techniques, researchers can collaborate on large-scale data analyses, identify patterns, and derive insights from diverse datasets while protecting participant privacy and data confidentiality.
• Promoting data citation and attribution: Encouraging data citation and attribution practices acknowledges the contributions of data contributors, promotes data reuse, and enhances research reproducibility and transparency. Providing persistent identifiers (DOIs) for datasets, citing data sources in publications, and adhering to data citation standards facilitate the proper attribution and recognition of data contributors. Data citation policies and guidelines promote responsible data use and incentivize data sharing within the research community.

6. Literature Reviews

7. future directions, 7.1. integration of advanced technologies.

• Blockchain technology: Blockchain technology provides a decentralized and tamper-resistant platform for secure and transparent data management in biobanking [ 79 ]. By utilizing blockchain’s unalterable ledger and cryptographic hashing, biobanks can ensure data integrity, traceability, and auditability throughout the data lifecycle. Blockchain-based solutions enable secure data sharing, provenance tracking, and consent management, fostering trust among data contributors, researchers, and participants [ 80 ].
• Post-quantum cryptography and quantum-secure communication: To enhance data security against emerging threats posed by quantum computing, the integration of post-quantum cryptography (PQC) and quantum-secure communication technologies offers a promising path forward. These approaches are designed to counteract vulnerabilities that quantum computing could exploit, potentially compromising existing cryptographic systems. ○ Post-quantum cryptography: This involves developing cryptographic algorithms that are designed to stay secure even when quantum computers are in use. Unlike classical computers that use binary bits, quantum computers utilize qubits, which can exist in multiple states at the same time due to the principle of quantum superposition, allowing for significantly faster computations. This capability poses a threat to cryptographic methods such as RSA and Elliptic Curve Cryptography (ECC), which depend on the difficulty of solving mathematical problems like factoring large numbers or calculating discrete logarithms; these are tasks that quantum algorithms can handle much more efficiently. In biobanking, adopting PQC is vital to protect the vast amounts of sensitive personal and genetic data stored in these repositories. Given the potential for cyberattacks targeting personal identifiers and genetic sequences, PQC algorithms—such as those based on lattice-based cryptography, hash-based signatures, and multivariate quadratic equations—are being developed and standardized. Implementing these algorithms will help ensure that sensitive information remains secure, even as quantum computing becomes more widespread [ 81 ]. ○ Quantum-secure communication: Quantum-secure communication uses the principles of quantum mechanics to safeguard data transmissions. Key techniques encompass Quantum Key Distribution (QKD) and quantum entanglement. QKD enables two parties to create a shared secret key protected by quantum laws. Any eavesdropping attempts would disturb the quantum states, making the intrusion detectable. For biobanks, using quantum-secure communication methods can greatly improve the protection of sensitive data during transmission. Given the frequent exchange of personal and genetic information among researchers, institutions, and regulatory bodies, ensuring the security and confidentiality of these communications is crucial. Technologies like QKD provide strong defenses against interception and tampering, thereby enhancing the security of data exchanges across networks [ 82 , 83 ].
• Artificial intelligence and machine learning: Artificial intelligence and machine learning algorithms enable biobanks to analyze large-scale datasets [ 84 , 85 ], identify patterns, and extract actionable insights for precision medicine and personalized healthcare [ 86 ]. AI-driven approaches facilitate data mining, predictive modeling, and biomarker discovery, accelerating the translation of biomedical research into clinical applications [ 87 ]. AI-powered decision support systems aid in clinical diagnosis, treatment optimization, and patient stratification based on genetic and clinical data [ 88 , 89 ].
• Federated learning: Federated learning facilitates collaborative model training across dispersed data sources while upholding data privacy and confidentiality. In biobanking, federated learning facilitates multi-center data analysis, enabling researchers to aggregate and analyze data from disparate biobanks without centrally pooling sensitive data. Federated learning platforms empower biobanks to collaborate on large-scale data analyses, share insights, and derive collective knowledge while protecting participant privacy and data security.
• Genomic data analysis: Advances in genomic technologies, such as next-generation sequencing (NGS) and single-cell sequencing, revolutionize genomic data analysis in biobanking [ 90 ]. High-throughput sequencing platforms generate vast amounts of genomic data, enabling the comprehensive characterization of genetic variation, gene expression, and epigenetic modifications. Bioinformatics tools and cloud-based analysis platforms facilitate genomic data analysis [ 13 , 91 ], variant interpretation, and genotype–phenotype association studies, advancing our understanding of complex diseases and guiding personalized medicine approaches [ 33 ].
• Omics integration: Integrating multi-omics data, including genomics, transcriptomics, proteomics, and metabolomics, offers holistic insights into biological systems and disease mechanisms [ 92 ]. Integrative omics analysis enables researchers to elucidate molecular pathways, identify biomarkers, and uncover therapeutic targets for precision medicine interventions [ 48 ]. Integrative bioinformatics approaches, such as pathway analysis, network modeling, and data fusion techniques, enhance data interpretation and facilitate discovery-driven research in biobanking [ 93 ].
• Biobanking informatics platforms: Biobanking informatics platforms provide integrated solutions for data management, analysis, and collaboration, streamlining biobank operations and supporting research workflows [ 45 , 94 , 95 ]. These platforms offer features such as sample tracking, metadata management, data curation, and analysis tools tailored to biobanking needs [ 26 , 96 , 97 ]. Cloud-based informatics platforms enable scalable and secure data storage, analysis, and sharing, empowering biobanks to leverage advanced technologies and collaborate with researchers worldwide [ 98 ].
• Emerging technologies: Emerging technologies, such as single-cell analysis, spatial transcriptomics, and organoid modeling, offer novel approaches for studying cellular heterogeneity, tissue architecture, and disease mechanisms in biobanking. These technologies enable researchers to capture fine-grained molecular profiles, spatially resolve cellular interactions, and model complex biological processes in vitro. Integrating emerging technologies into biobanking workflows expands research capabilities, facilitates disease modeling, and accelerates drug discovery efforts [ 99 ].

7.2. Long-Term Data Sustainability

• Data stewardship and governance: Establishing robust data stewardship and governance frameworks is essential for ensuring the long-term sustainability of biobank data [ 100 ]. Data stewardship involves the responsible management, curation, and preservation of data assets [ 101 ], while governance encompasses policies, procedures, and oversight mechanisms to ensure compliance with legal, ethical, and regulatory requirements. Implementing clear roles, responsibilities, and accountability structures fosters a culture of data stewardship and ensures the continuity of data management practices over time.
• Data preservation and archiving: Preserving data integrity and accessibility over the long term requires establishing archival strategies and preservation methods tailored to the unique characteristics of biobank data. Archiving data in secure, redundant storage systems, such as digital repositories or cloud-based storage solutions, safeguards against data loss, hardware failures, or technological obsolescence. Implementing data backup, versioning, and migration strategies ensures data resilience and facilitates data recovery in the event of system failures or disasters.
• Metadata standardization and documentation: Standardizing metadata formats, documentation practices, and data descriptors enhances data discoverability, interoperability, and usability over time [ 34 ]. Documenting metadata attributes, data provenance, and data processing protocols ensures that data remain comprehensible and interpretable by future users. Metadata standards, such as the Minimum Information About a Biobank (MIABIS) or the FAIR (Findable, Accessible, Interoperable, and Reusable) principles [ 30 , 101 ], guide metadata documentation and promote data sustainability by enhancing data reuse and interoperability.
• Data quality assurance and maintenance: Maintaining data quality and reliability is essential for preserving the value and integrity of biobank data over time. Implementing data quality assurance measures, such as regular audits, validation checks, and data cleaning procedures, ensures that data remain accurate, consistent, and fit for purpose. Ongoing surveillance of data quality metrics and performance indicators allows biobanks to detect and rectify instances of data degradation or quality issues proactively, thereby sustaining data utility and trustworthiness.
• Data security and privacy protection: Safeguarding data security and protecting participant privacy are paramount considerations for ensuring the long-term sustainability of biobank data [ 102 ]. Deploying strong data security measures, encryption techniques, access controls, and privacy safeguards helps alleviate the potential for data breaches, unauthorized access, or the misuse of data. Adhering to data protection laws, ethical guidelines, and best practices for data anonymization and de-identification ensures that data remain ethically and legally compliant while supporting data sharing and research collaboration.
• Community engagement and collaboration: Engaging stakeholders, including researchers, participants, funding agencies, and regulatory bodies, fosters collaboration, promotes transparency, and ensures the continued relevance and sustainability of biobank data resources. Soliciting feedback, addressing community needs, and involving stakeholders in decision-making processes empower stakeholders to contribute to data governance, policy development, and resource allocation efforts [ 103 , 104 ]. Collaborative initiatives, such as data-sharing consortia, working groups, and community-driven projects, foster a sense of ownership and collective responsibility for sustaining biobank data resources [ 105 ].

7.3. Ethical and Social Implications

• Informed consent and participant autonomy: Upholding the principles of informed consent and participant autonomy is paramount in biobanking to ensure that individuals have the right to make informed decisions about the use of their biological samples and data [ 107 ]. Future directions should focus on enhancing consent processes, providing clear and understandable information to participants, and offering opportunities for dynamic consent, allowing individuals to update their preferences over time [ 108 , 109 ].
• Privacy and data confidentiality: Protecting participant privacy and ensuring the confidentiality of sensitive data are ethical imperatives in biobanking [ 110 ]. As biobanks collect and store large volumes of personal health information and genetic data, future directions should prioritize robust data security measures, anonymization techniques, and encryption protocols to mitigate privacy risks and prevent unauthorized access or breaches.
• Equitable access and benefit sharing: Addressing issues of equity and justice in biobanking involves ensuring that the benefits derived from research are shared equitably among participants, communities, and stakeholders. Future directions should promote transparent and fair access to biobank resources, prioritize the inclusion of under-represented populations in research, and establish mechanisms for benefit sharing, such as community engagement initiatives, research partnerships, and capacity-building programs.
• Data governance and oversight: Implementing effective data governance mechanisms and oversight frameworks is essential for ensuring responsible and ethical conduct in biobanking. Future directions should focus on developing robust data governance policies, establishing independent oversight bodies, and fostering collaboration among stakeholders to promote accountability, transparency, and ethical decision making in data management and research practices.
• Cultural sensitivity and respect for diversity: Recognizing and respecting cultural differences, values, and beliefs is essential in biobanking to ensure that research practices are culturally sensitive and inclusive [ 108 ]. Future directions should prioritize culturally tailored approaches to consent processes, engage with diverse communities in research planning and implementation, and address cultural concerns and preferences regarding data sharing, storage, and use [ 111 ].
• Public engagement and trust building: Building public trust and fostering the meaningful engagement of stakeholders are critical for success and sustainability of biobanking initiatives. Future directions should emphasize transparency, communication, and dialogue with the public, raise awareness about the benefits and risks of biobanking, and solicit input from diverse perspectives to inform decision-making processes and research priorities.
• Ethical use of biobank resources: Ensuring that biobank resources are used ethically and responsibly requires adherence to ethical guidelines, professional standards, and regulatory requirements. Future directions should prioritize ethical considerations in research design, data analysis, and the dissemination of findings, promote responsible conduct of research, and establish mechanisms for ethical review and oversight to safeguard participant welfare and uphold research integrity.

8. Conclusions

Author contributions, institutional review board statement, informed consent statement, data availability statement, acknowledgments, conflicts of interest.

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Alkhatib, R.; Gaede, K.I. Data Management in Biobanking: Strategies, Challenges, and Future Directions. BioTech 2024 , 13 , 34. https://doi.org/10.3390/biotech13030034

Alkhatib R, Gaede KI. Data Management in Biobanking: Strategies, Challenges, and Future Directions. BioTech . 2024; 13(3):34. https://doi.org/10.3390/biotech13030034

Alkhatib, Ramez, and Karoline I. Gaede. 2024. "Data Management in Biobanking: Strategies, Challenges, and Future Directions" BioTech 13, no. 3: 34. https://doi.org/10.3390/biotech13030034

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