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

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 wellbeing of people affected by CF.

Clinical communication preferences in cystic fibrosis and strategies to optimize care

“…Underscoring the theme of Eliciting Psychosocial Concerns, a recent CF "Community Voice" survey identified mental health and reducing treatment burden top priorities for future CF research. 20 Individuals with CF and parent caregivers are at elevated risk for depression and anxiety. 21,22 In adults with CF, depression is associated with reduced quality of life independent of lung function.…”

Cystic fibrosis year in review 2018, part 2

“…In the US, the Insight CF project garnered research questions submitted by the CF community. Questions were then refined into 12 broad research topic areas for prioritization by the Clinical Research Advisory Board (a group of CF research experts) and Community Voice (a group of people and families affected by CF) . Similarly, in the UK, in coordination with the National Institute for Health Research James Lind Alliance, identification of key treatment uncertainties led to production of the top 10 research questions .…”

“…Similarly, in the UK, in coordination with the National Institute for Health Research James Lind Alliance, identification of key treatment uncertainties led to production of the top 10 research questions . Not surprisingly, the two surveys had similar outcomes, with the US top three prioritization including respiratory microorganism detection and treatment, mental health and treatment burden . In the UK, treatment burden was ranked at the top of the list, and infection treatment, with two specific infection questions, specific to NTM and Pseudomonas aeruginosa , included in their rankings .…”

“…Questions were then refined into 12 broad research topic areas for prioritization by the Clinical Research Advisory Board (a group of CF research experts) and Community Voice (a group of people and families affected by CF). 22 Similarly, in the UK, in coordination with the National Institute for Health Research James Lind Alliance, identification of key treatment uncertainties led to production of the top 10 research questions. 23 Not surprisingly, the two surveys had similar outcomes, with the US top three prioritization including respiratory microorganism detection and treatment, mental health and treatment burden.…”

“…23 Not surprisingly, the two surveys had similar outcomes, with the US top three prioritization including respiratory microorganism detection and treatment, mental health and treatment burden. 22 In the UK, treatment burden was ranked at the top of the list, and infection treatment, with two specific infection questions, specific to NTM and Pseudomonas aeruginosa, included in their rankings. 23 Addressing some of these concerns, at the North American Cystic Fibrosis Conference in 2018, the CF Foundation announced a $100 million, 5-year, infection research initiative, to improve detection, diagnosis, treatment, and outcomes of CF infections.…”