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Beyond the expected: Identifying broad research priorities of researchers and the cystic fibrosis community
Authors:I.L. Hollin  S.H. Donaldson  C. Roman  E. Aliaj  D. Riva  M. Boyle  D. Borowitz
Affiliation:1. Temple University College of Public Health, Philadelphia, PA, United States;2. Cystic Fibrosis Community Member, United States;3. University of North Carolina School of Medicine, Chapel Hill, NC, United States;4. Cystic Fibrosis Foundation, Bethesda, MD, United States;5. Johns Hopkins University School of Medicine, Baltimore, MD, United States;6. Jacobs School of Medicine and Biomedical Sciences, Buffalo, NY, United States
Abstract:The Cystic Fibrosis Foundation (CFF) supports research programs aimed at improving care and building a successful drug development pipeline. To ensure its research agenda meets the needs of the community it serves, the CFF sought community input into clinical research prioritization for topics not well-known as already being addressed by CFF-funded research. In 2018, clinical researchers, adults with CF, and family members were surveyed about a broad range of research topics that are perceived to receive less attention. We compared responses from researchers (n = 19) and community members (n = 135) and found groups aligned on their top three research priorities: 1) respiratory microorganism detection and treatment, 2) mental health, and 3) reducing treatment burden. We also explored whether or not those priorities align with the CFF research portfolio. Cognizance of researcher and community priorities can help inform clinical research endeavors to improve the health and well-being of people affected by CF.
Keywords:Corresponding author at: Department of Health Services Administration and Policy, Temple University College of Public Health, 1301 Cecil B. Moore Ave., #537, Philadelphia, PA 19122, United States.  Community engagement  Priority setting
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