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Characterising cystic fibrosis in African populations: a scoping review protocol on phenotype, diagnosis, genetics and barriers to care

Por: Ratner · L. · Marangu-Boore · D. · Hamouda · S. · Kwarteng Owusu · S. · Eze · J. · Dakshi · A. · Wordui · S. · Hamdy · A. · Owusu · S. A. · Weldetsadik · Y. · Uluer · A. · Daimi · H. · El Makhzen · N. · Abriel · H. · Nasr · S. · Moosa · S. · Swanson · C. · Cronin · A. E. · Zampoli · M.
Introduction

Cystic fibrosis (CF) is a life-shortening genetic disorder traditionally mischaracterised as affecting only populations of European descent. This framing has contributed to under-recognition of CF in African populations, despite emerging evidence of both common and region-specific cystic fibrosis transmembrane conductance regulator mutations across the continent. Diagnostic barriers, structural inequities and lack of surveillance further exacerbate disparities in care and visibility.

Methods and analysis

This scoping review aims to characterise CF in African populations by synthesising evidence on clinical presentation, diagnostic practices, genotypic diversity, prevalence and structural barriers to care. We will include case reports, cohort studies, registry analyses and other primary data sources involving individuals of African descent with suspected or confirmed CF. Key outcomes include clinical phenotype, age at diagnosis, mutation profile, diagnostic testing access and mortality. Data sources include Ovid Medline, Embase, Ebsco Global Health, CAB Abstracts and Web of Science Core Collection. Multiple-reviewer screening and extraction will be conducted. We will use narrative synthesis, thematic analysis and meta-analysis for prevalence where feasible.

Ethics and dissemination

No ethical approval is required as the review uses published data. Results will be shared with clinicians, researchers and CF networks in Africa and globally to inform diagnostic strategies and policy.

Community advisory boards to inform behavioural health research in primary care: protocol for a scoping review

Por: McDermott · K. A. · Vonderheide · C. C. · Cronin · A. E. · Vranceanu · A.-M. · Plys · E.
Introduction

Most patients receive behavioural healthcare (BH) in a primary care setting, yet much of the BH research was not developed to account for eventual implementation. Areas of research and intervention that are considered priorities to patients may be absent from our existing knowledge base. Engaging the community in the research process can facilitate translation and uptake. A key strategy for community engagement is to employ a Community Advisory Board (CAB). CABs can assist in a number of research processes, including guiding research questions to fit the priorities of the community and creating research materials that are tailored to the patient population and healthcare setting. There is variability in practices and reporting standards for CABs. The field would benefit from a summary of the state of the current literature on CAB utilisation for BH research in primary care. To fill this gap, we will conduct a scoping review to answer the question, ‘What is known about the use of CABs in behavioural health studies in primary care?’.

Methods and analysis

We will use the guidelines for scoping reviews outlined by Arksey and O’Malley: (1) identifying the research question; (2) identifying relevant studies; (3) study selection; (4) charting the data and (5) collating, summarising and reporting the results. Our reporting of the results will be guided by the Arnos and colleagues Toolkit for Project-Based Community Advisory Boards, a set of practical guidelines for employing a CAB. To this end, we will report on how well CABs currently employed in BH primary care research match existing guidelines and what gaps need to be filled by future research.

Ethics and dissemination

This review does not require ethics board approval, as no patient data will be collected. We will disseminate findings primarily through journal publications and conference presentations.

Trial registration number

This scoping review protocol was registered on the Open Science Framework (https://osf.io/pa3rz/?view_only=31c558eb395a4a9482ee9c5b57ca1c4c)

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