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

doi:10.1016/j.jcf.2018.11.010

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

J Cyst Fibros. 2019 May;18(3):375-377. doi: 10.1016/j.jcf.2018.11.010. Epub 2018 Nov 28.

Authors

I L Hollin¹, S H Donaldson², C Roman³, E Aliaj³, D Riva⁴, M Boyle⁵, D Borowitz⁶

Affiliations

¹ Temple University College of Public Health, Philadelphia, PA, United States; Cystic Fibrosis Community Member, United States. Electronic address: [email protected].
² University of North Carolina School of Medicine, Chapel Hill, NC, United States.
³ Cystic Fibrosis Foundation, Bethesda, MD, United States.
⁴ Cystic Fibrosis Community Member, United States; Cystic Fibrosis Foundation, Bethesda, MD, United States.
⁵ Cystic Fibrosis Foundation, Bethesda, MD, United States; Johns Hopkins University School of Medicine, Baltimore, MD, United States.
⁶ Cystic Fibrosis Foundation, Bethesda, MD, United States; Jacobs School of Medicine and Biomedical Sciences, Buffalo, NY, United States.

PMID: 30503031
DOI: 10.1016/j.jcf.2018.11.010

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: Community engagement; Priority setting.

MeSH terms

Attitude of Health Personnel
Attitude to Health
Biomedical Research* / methods
Biomedical Research* / organization & administration
Cost of Illness*
Cystic Fibrosis* / microbiology
Cystic Fibrosis* / psychology
Cystic Fibrosis* / therapy
Drug Development / methods
Humans
Mental Health / standards*
Needs Assessment
Patient Care Management* / methods
Patient Care Management* / standards
Research Personnel
Research*
Surveys and Questionnaires
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