JBI evidence synthesis最新文献

{"title":"Oncology care humanization in adults: a scoping review protocol.","authors":"Ana Sofia Lopes, Ana Lúcia Ribeiro, Bárbara Lamas, Daniela Santos, Davide Fernandes, Rosa Silva, Paulo Marques","doi":"10.11124/JBIES-24-00295","DOIUrl":"https://doi.org/10.11124/JBIES-24-00295","url":null,"abstract":"<p><strong>Objective: </strong>The goal of this review is to identify and map health professionals' attitudes and behaviors that promote humanization of the care provided to adults with cancer, regardless of disease stage or treatment nature, in all health care provision contexts.</p><p><strong>Introduction: </strong>In the challenging context of oncology care, it becomes imperative to adopt a humanized care paradigm. This paradigm should foster a relationship of respect and compassion between health professionals and people, and its interventions should be sensitive to their values, culture, and human dignity.</p><p><strong>Inclusion criteria: </strong>Studies involving health professionals' attitudes and behaviors focused on promoting humanization of the health care provided to people with oncological diseases will be considered for this review.</p><p><strong>Methods: </strong>This review will follow the JBI methodology for scoping reviews. Publications will be identified via MEDLINE Complete, CINAHL Complete, MedicLatina, Psychology and Behavioral Sciences Collection, Scopus, and Web of Science. Additionally, backward and forward citation searches will be conducted, as will a thorough investigation of the gray literature. The studies identified will be screened by 2 independent reviewers based on their title and abstract, and then reviewed at the full-text level. The data will be extracted using a tool developed by the authors. The results will be summarized and presented in tables accompanied by a narrative summary.</p><p><strong>Review registration: </strong>Open Science Framework https://osf.io/56ev9/.</p>","PeriodicalId":36399,"journal":{"name":"JBI evidence synthesis","volume":" ","pages":""},"PeriodicalIF":1.5,"publicationDate":"2025-03-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143732139","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Non-pharmacological treatment for postural orthostatic tachycardia syndrome: a scoping review protocol.","authors":"Anna de Beer, Chaeyoon Han, Frank Sullivan","doi":"10.11124/JBIES-24-00253","DOIUrl":"https://doi.org/10.11124/JBIES-24-00253","url":null,"abstract":"<p><strong>Objective: </strong>The objective of the review is to systematically map the literature on non-pharmacological interventions for postural orthostatic tachycardia syndrome to identify and categorize interventions used, and highlight research gaps to guide future studies.</p><p><strong>Introduction: </strong>Postural orthostatic tachycardia syndrome is characterized by an excessive increase in heart rate upon standing and symptoms of orthostatic intolerance. Non-pharmacological interventions are first-line treatments; however, the breadth, characteristics, and gaps in the current evidence base have not been systematically mapped, making this scoping review necessary to guide future research directions.</p><p><strong>Inclusion criteria: </strong>Studies on non-drug, non-procedural, and non-invasive interventions for postural orthostatic tachycardia syndrome in both children and adults will be included. Both direct (affecting patients) and indirect (benefiting but not targeting patients) interventions in any setting will be considered. Original research, systematic reviews, meta-analyses, and gray literature will be included.</p><p><strong>Methods: </strong>A comprehensive search will be conducted across 6 databases (Ovid MEDLINE, Ovid Embase, Cochrane Library, CINAHL, Scopus, and Web of Science) and gray literature platforms. Searches will be limited to articles in English, Afrikaans, French, German, and Korean, with no restriction on publication date. Two reviewers will independently screen titles and abstracts, as well as full text, against the inclusion criteria. Data will be extracted using a standardized tool and presented to highlight key findings and research gaps. The initial data extraction form was developed after scanning the literature and will be iteratively refined as part of protocol development.</p><p><strong>Review registration: </strong>Open Science Framework https://osf.io/cg365.</p>","PeriodicalId":36399,"journal":{"name":"JBI evidence synthesis","volume":" ","pages":""},"PeriodicalIF":1.5,"publicationDate":"2025-03-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143721337","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Pediatric functional lung imaging and pulmonary function testing: a scoping review protocol.","authors":"Matthew Bruorton, Sarah Greenslade, Shagufta Perveen, Martin Donnelley, Antonia O'Connor, Jessica Phillips, David Parsons, Thomas Goddard, Kristin Carson-Chahhoud, Andrew Tai","doi":"10.11124/JBIES-24-00377","DOIUrl":"https://doi.org/10.11124/JBIES-24-00377","url":null,"abstract":"<p><strong>Objective: </strong>This scoping review aims to identify current and emerging functional lung imaging techniques that have been used in pediatric cohorts and how these techniques have been compared to pulmonary function tests.</p><p><strong>Introduction: </strong>Functional lung imaging enables the assessment of distribution of pulmonary parameters-including ventilation, perfusion, gas exchange, and biomechanics-to be mapped and quantified non-invasively throughout the lungs. In comparison to pulmonary function testing, functional lung imaging can provide additional clinically relevant information on the regional and spatial localization of lung disease. Pulmonary functional imaging has the potential to significantly benefit a pediatric cohort, giving clinicians an additional tool in assessing and managing pediatric lung disease.</p><p><strong>Inclusion criteria: </strong>Functional lung imaging techniques that have been investigated and compared or correlated with a pulmonary function test in pediatric cohorts will be identified and reviewed. Quantitative study designs and functional lung imaging techniques used in reviews and conference abstracts will be included if there is a comparative pulmonary function test. Gray literature will be screened for evidence of new and emerging technologies. Established author opinion will also be sought on new and emerging technologies in pediatric functional lung imaging.</p><p><strong>Methods: </strong>Key sources to be searched include MEDLINE, Embase, and CINAHL. Two reviewers will independently screen titles and abstracts against inclusion criteria. Extracted data will include details about the concept, context, study methods, and key information relevant to the study question. Data will be presented in tabular format, accompanied by a narrative synthesis.</p><p><p>Details of the review can be found in Open Science Framework: https://doi.org/10.17605/OSF.IO/SNUC6.</p>","PeriodicalId":36399,"journal":{"name":"JBI evidence synthesis","volume":" ","pages":""},"PeriodicalIF":1.5,"publicationDate":"2025-03-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143721424","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Effectiveness and safety of intranasal fentanyl for pain management in infants aged 0-6 months: a systematic review protocol.","authors":"Helen McCord, Melissa Rothfus, Tim Disher, Nadeana Norris, Karlee Jones, Laila Kristoffersen, Maria Syverud, Marsha Campbell-Yeo","doi":"10.11124/JBIES-24-00376","DOIUrl":"https://doi.org/10.11124/JBIES-24-00376","url":null,"abstract":"<p><strong>Objective: </strong>This review aims to assess and synthesize the existing literature on the effectiveness and safety of intranasal fentanyl versus no intervention, placebo, non-pharmacological, or pharmacological interventions for pain management in infants aged 0-6 months.</p><p><strong>Introduction: </strong>Pain management in infants, especially given their exposure to frequent painful procedures, is a crucial concern. The potential benefits of intranasal fentanyl are notable, but comprehensive guidelines for its use in infants is lacking.</p><p><strong>Inclusion criteria: </strong>This review will include experimental and non-experimental quantitative studies comparing intranasal fentanyl, at any dose/frequency, for pain management in infants aged 0-6 months, against comparators such as no intervention, placebo, or other pharmacological and non-pharmacological interventions. Procedures will include those considered to be tissue-breaking, needle-related, non-tissue-breaking, or any procedure deemed to be painful. The primary outcome will be pain intensity during procedures, chosen for its relevance in evaluating the effectiveness of intranasal fentanyl. Secondary outcomes will include pain response, recovery, frequency of repeated dosing, and safety. Studies in any language will be considered.</p><p><strong>Methods: </strong>This review will adhere to the JBI methodology for systematic reviews and the Preferred Reporting Items Form Systematic Review and Meta-Analysis Protocols (PRISMA) guidelines. A 3-step search strategy will be used to search databases (MEDLINE, Embase, CINAHL, Scopus) without date restrictions. The search results will be reported in a PRISMA flow diagram. Two independent reviewers will extract detailed data on participants, methods, interventions, and outcomes. Certainty will be assessed with JBI appraisal tools to evaluate study quality and bias risk. Data synthesis will combine findings using statistical models, or narrative summaries when meta-analysis is not feasible.</p><p><strong>Systematic review registration number: </strong>PROSPERO CRD42024551524.</p>","PeriodicalId":36399,"journal":{"name":"JBI evidence synthesis","volume":" ","pages":""},"PeriodicalIF":1.5,"publicationDate":"2025-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143701723","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Inpatient to outpatient care transition interventions for adults with mental health conditions: a scoping review protocol.","authors":"Hanna Burkhart, Selina Müller, Markus W Haun","doi":"10.11124/JBIES-24-00302","DOIUrl":"https://doi.org/10.11124/JBIES-24-00302","url":null,"abstract":"<p><strong>Objective: </strong>The aim of this scoping review is to provide an overview of the key characteristics of care transition interventions (CTIs) from inpatient to outpatient care for adults with mental disorders.</p><p><strong>Introduction: </strong>Many patients with mental health disorders experience treatment discontinuation during the transition from inpatient to outpatient mental health care, which is associated with high rates of rehospitalization and/or suicidal behavior. CTIs provide low-threshold support to facilitate patients' access and adherence to outpatient treatment and ultimately, decrease rehospitalization rates.</p><p><strong>Inclusion criteria: </strong>We will include quantitative and qualitative study designs as well as study protocols and systematic reviews on CTIs for adults with mental health disorders (except for neurocognitive disorders). The CTIs need to include the following features: (i) initial session still during inpatient treatment or within the first 4 weeks after treatment and (ii) at least 1 additional session after patient discharge. We will exclude (i) interventions aiming solely to improve symptom severity (eg, medication, psychotherapy), (ii) studies conducted in the context of forensic and/or prison mental health care and (iii) studies focusing primarily on return to work or the prevention of homelessness.</p><p><strong>Methods: </strong>We will search PubMed, CINAHL (EBSCOhost), Cochrane Central Register of Controlled Trials (CENTRAL), PsycINFO (EBSCOhost), Web of Science, OpenGrey, and ProQuest Dissertations & Theses for potentially relevant records. Two independent reviewers will conduct the initial title/abstract screening and full-text screening. Data will be extracted in a draft charting table and presented in a narrative synthesis accompanied by graphic visualizations and tables, in line with the review questions.</p><p><strong>Review registration: </strong>Open Science Framework 10.31234/osf.io/e9v7y.</p>","PeriodicalId":36399,"journal":{"name":"JBI evidence synthesis","volume":" ","pages":""},"PeriodicalIF":1.5,"publicationDate":"2025-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143664876","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Online peer support for people with dementia: a scoping review protocol.","authors":"Esther Vera Loseto-Gerritzen, Catherine Talbot, Orii McDermott, Martin Orrell, Neil S Coulson","doi":"10.11124/JBIES-24-00343","DOIUrl":"https://doi.org/10.11124/JBIES-24-00343","url":null,"abstract":"<p><strong>Objective: </strong>The objective of this scoping review is to gain insights into the different online peer support opportunities available for people with dementia.</p><p><strong>Introduction: </strong>People with dementia use a variety of online platforms for peer support, such as social networking sites or videoconferencing platforms. Online peer support can offer a variety of benefits, such as overcoming geographical barriers and the opportunity to choose a platform and mode of communication that suits a person's needs and preferences. However, there is currently no synthesis of the different online peer support opportunities available to people with dementia.</p><p><strong>Inclusion criteria: </strong>Participants in this review will include people living with a self-reported diagnosis of any form of dementia. The concept is peer support through online platforms, while the context is online peer support that is accessible in English.</p><p><strong>Methods: </strong>The review will be conducted according to the JBI methodology for scoping reviews. A 3-step strategy will be used to search 4 data sources: (1) scholarly and gray literature databases, (2) Google search engine, (3) social media and websites of dementia organizations, and (4) consultations with people with dementia and professionals. The review will be managed in Covidence and Excel. The study selection and data extraction will be conducted by 2 independent reviewers and a third reviewer will be consulted if needed. For the data extraction a draft data extraction instrument will be used, following the recommendations of JBI. Data will be extracted on platform, online peer support, and study characteristics. The findings will be presented in tables and a narrative summary.</p><p><strong>Details of this review project can be found in open science framework: </strong>https://doi.org/10.17605/OSF.IO/8JTQC.</p>","PeriodicalId":36399,"journal":{"name":"JBI evidence synthesis","volume":" ","pages":""},"PeriodicalIF":1.5,"publicationDate":"2025-03-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143658970","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Out-of-hospital care of postpartum hemorrhage: a scoping review.","authors":"Rachel Soh, Lucymarie Silvestri, Anna Pearce, James Pearce","doi":"10.11124/JBIES-24-00058","DOIUrl":"https://doi.org/10.11124/JBIES-24-00058","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;Given the paucity of information on managing out-of-hospital postpartum hemorrhage, this scoping review aimed to systematically map current literature on the scope, depth, and key concepts on the topic, as well as identify gaps and areas for further study.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Introduction: &lt;/strong&gt;Postpartum hemorrhage is characterized by blood loss after childbirth that endangers hemodynamic stability of the mother. It can cause rapid deterioration if not managed promptly and remains the leading cause of maternal morbidity and mortality worldwide, particularly in resource-limited, out-of-hospital settings; however, knowledge about its management is limited.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;The JBI scoping review methodology was utilized for this review. A comprehensive search strategy was employed across MEDLINE (Ovid), CINAHL Complete (EBSCOhost), Embase (Ovid), Scopus, Web of Science, as well as gray literature databases ProQuest Dissertations and Theses and EBSCOhost Open Dissertations. A Google search and a hand-search of relevant, peer-reviewed journals was also performed. Inclusion criteria were applied to identify appropriate literature. Studies that describe emergency out-of-hospital care of both primary and secondary postpartum hemorrhage in women regardless of age, ethnicity, parity, or comorbidities were considered. Of these, only those published in English after 1988 were included. Selection of sources for inclusion were then determined by 2 independent reviewers; discrepancies in outcomes were discussed with a third reviewer. The reference lists of all included sources were screened and authors were contacted before data were extracted and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR) reporting guideline.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;The search yielded 311 unique records, of which 43 were included in the synthesis. All the included studies were published literature, of which, the majority were primary studies and secondary reviews. A significant proportion of the included studies were published by authors from the United States, United Kingdom and Australia. Across the literature, care of patients with OOHBs is hinged on actively managing the third stage, involving pharmacological and mechanical measures to facilitate placenta delivery. When postpartum bleeding compromises hemodynamic stability of the mother, current practices include standard hemorrhage protocols alongside measures to reverse the cause of the hemorrhage. However, our findings indicate substantial inconsistencies in recognition and management of out-of-hospital postpartum hemorrhage. This can be attributed to variabilities in identification methods and interventions, gaps in practitioner knowledge and skillsets, lack of clinical practice guidelines, social determinants affecting health care access, and logistical challenges in providing timely medica","PeriodicalId":36399,"journal":{"name":"JBI evidence synthesis","volume":" ","pages":""},"PeriodicalIF":1.5,"publicationDate":"2025-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143625743","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Experiences of HIV and/or AIDS caregiving by informal caregivers and the experience of care in low- and middle-income countries: a qualitative systematic review protocol.","authors":"Benjamin Spears Ngmekpele Cheabu, Christina Godfrey, Madison A Robertson, Amanda Ross-White, Rylan Egan","doi":"10.11124/JBIES-24-00118","DOIUrl":"https://doi.org/10.11124/JBIES-24-00118","url":null,"abstract":"<p><strong>Objectives: </strong>The objective of this review is to identify, appraise, and synthesize available evidence on the experiences of informal caregivers providing HIV and/or AIDS care and the experiences of care received by people living with HIV and/or AIDS (PLHIV) in sub-Saharan Africa.</p><p><strong>Introduction: </strong>PLHIV share the burden of the disease with their informal caregivers throughout their lives. Experiences of HIV- and/or AIDS-related caregiving and care receiving have a significant impact on the treatment and physiological health outcomes of both care receivers and caregivers. However, there is limited evidence regarding how caregiving approaches and caregiving experiences influence HIV and/or AIDS care.</p><p><strong>Inclusion criteria: </strong>This review will consider qualitative studies on informal caregivers providing HIV- and/or AIDS-related care and PLHIV receiving care in sub-Saharan Africa. Eligible studies will focus on positive and negative experiences of informal caregivers and PLHIV throughout the HIV/AIDS caregiving continuum.</p><p><strong>Methods: </strong>A comprehensive search strategy will be developed to retrieve relevant articles from Ovid MEDLINE (R), Embase (Ovid), PsycINFO (Ovid), and CINAHL (EBSCOhost). The review will be conducted by 2 independent reviewers using the JBI approach to perform study selection, critical appraisal, data extraction, assessment of confidence, and data synthesis.</p><p><strong>Review registration: </strong>PROSPERO CRD42023470996.</p>","PeriodicalId":36399,"journal":{"name":"JBI evidence synthesis","volume":" ","pages":""},"PeriodicalIF":1.5,"publicationDate":"2025-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143597920","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The revised JBI critical appraisal tool for the assessment of risk of bias for cohort studies.","authors":"Timothy H Barker, Sabira Hasanoff, Edoardo Aromataris, Jennifer C Stone, Jo Leonardi-Bee, Kim Sears, Nahal Habibi, Miloslav Klugar, Catalin Tufanaru, Sandeep Moola, Xian-Liang Liu, Zachary Munn","doi":"10.11124/JBIES-24-00103","DOIUrl":"10.11124/JBIES-24-00103","url":null,"abstract":"<p><p>Cohort studies are a robust analytical observational study design that explore the difference in outcomes between two cohorts, differentiated by their exposure status. Despite being observational in nature, they are often included in systematic reviews of effectiveness, particularly when randomized controlled trials are limited or not feasible. Like all studies included in a systematic review, cohort studies must undergo a critical appraisal process to assess the extent to which a study has considered potential bias in its design, conduct, or analysis. Critical appraisal tools facilitate this evaluation. This paper introduces the revised critical appraisal tool for cohort studies, completed by the JBI Effectiveness Methodology Group, who are currently revising the suite of JBI critical appraisal tools for quantitative study designs. The revised tool responds to updates in methodological guidance from the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) Working Group and reporting guidance from PRISMA 2020, providing a robust framework for evaluating risk of bias in a cohort study. Transparent and rigorous assessment using this tool will assist reviewers in understanding the validity and relevance of the results and conclusions drawn from a systematic review that includes cohort studies. This may contribute to better evidence-based decision-making in health care. This paper discusses the key changes made to the tool, outlines justifications for these changes, and provides practical guidance on how this tool should be interpreted and applied by systematic reviewers.</p>","PeriodicalId":36399,"journal":{"name":"JBI evidence synthesis","volume":" ","pages":"441-453"},"PeriodicalIF":1.5,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142037276","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Barriers and facilitators to designing, maintaining, and utilizing rare disease patient registries: a scoping review protocol.","authors":"Catherine Stratton, Andrew Taylor, Menelaos Konstantinidis, Vanda McNiven, Peter Kannu, Peter Gill, Ian Stedman, Areti Angeliki Veroniki, Martin Offringa, Beth Potter, Durhane Wong-Rieger, John Adams, Kathy Hodgkinson, Alison M Elliott, Alexandra Neville, Marie Faughnan, Sarah Dyack, Pavel Zhelnov, Jennifer Daly-Cyr, Jessie McGowan, Sharon Straus, Maureen Smith, Laura Rosella, Andrea C Tricco","doi":"10.11124/JBIES-24-00091","DOIUrl":"10.11124/JBIES-24-00091","url":null,"abstract":"<p><strong>Objective: </strong>The objectives of this review are to identify barriers and facilitators to designing, maintaining, and utilizing rare disease patient registries; determine whether and how these differ among patient partners, other knowledge users, and researchers; and chart definitions of rare diseases and rare disease patient registries.</p><p><strong>Introduction: </strong>Rare disease patient registries are vital to improving the understanding of the natural histories and predictors of outcomes of rare diseases, assessing interventions, and identifying potential participants for clinical trials. Currently, however, the functionality of rare disease patient registries is not fully optimized. To improve the quality and functionality of rare disease patient registries, it is important to understand the barriers and/or facilitators involved in their design, maintenance, and utilization; how these might differ among patient partners, other knowledge users, and researchers; and to delineate the range of definitions for rare diseases and rare disease patient registries.</p><p><strong>Inclusion criteria: </strong>Evidence from any study design or format (including empirical studies, books, manuals, commentaries, editorials, guidance documents, conference abstracts, review documents, and gray literature) that references barriers or facilitators for designing, maintaining, or utilizing rare disease patient registries will be considered for inclusion.</p><p><strong>Methods: </strong>The review will follow the JBI methodology for scoping reviews. We will search health science databases, including the Cochrane Library, Embase, MEDLINE, the JBI EBP Database, and PsycINFO, from inception onwards. Multiple sources will be searched for theses and gray literature, including the Canadian Agency for Drugs and Technologies in Health (CADTH) Grey Matters. Two independent reviewers will screen titles and abstracts and full-text documents, as well as abstract data. Disagreements will be resolved through discussion or with a third reviewer. Evidence will be synthesized descriptively and reported using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRIMSA-ScR).</p><p><strong>Review registration: </strong>Open Science Framework https://osf.io/mvf9r.</p>","PeriodicalId":36399,"journal":{"name":"JBI evidence synthesis","volume":" ","pages":"546-553"},"PeriodicalIF":1.5,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142476700","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}