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Beyond the expected: Identifying broad research priorities of researchers and the cystic fibrosis community

  • I. L. Hollin
  • , S. H. Donaldson
  • , C. Roman
  • , E. Aliaj
  • , D. Riva
  • , M. Boyle
  • , D. Borowitz
  • Temple University
  • Cystic Fibrosis Community Member
  • University of North Carolina at Chapel Hill
  • Cystic Fibrosis Foundation
  • Johns Hopkins University

Research output: Contribution to journalArticlepeer-review

41 Scopus citations

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.

Original languageEnglish
Pages (from-to)375-377
Number of pages3
JournalJournal of Cystic Fibrosis
Volume18
Issue number3
DOIs
StatePublished - May 2019

Keywords

  • Community engagement
  • Priority setting

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