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Beyond the expected: Identifying broad research priorities of researchers and the cystic fibrosis community.
Hollin, I L; Donaldson, S H; Roman, C; Aliaj, E; Riva, D; Boyle, M; Borowitz, D.
Afiliação
  • Hollin IL; Temple University College of Public Health, Philadelphia, PA, United States; Cystic Fibrosis Community Member, United States. Electronic address: ilene.hollin@temple.edu.
  • Donaldson SH; University of North Carolina School of Medicine, Chapel Hill, NC, United States.
  • Roman C; Cystic Fibrosis Foundation, Bethesda, MD, United States.
  • Aliaj E; Cystic Fibrosis Foundation, Bethesda, MD, United States.
  • Riva D; Cystic Fibrosis Community Member, United States; Cystic Fibrosis Foundation, Bethesda, MD, United States.
  • Boyle M; Cystic Fibrosis Foundation, Bethesda, MD, United States; Johns Hopkins University School of Medicine, Baltimore, MD, United States.
  • Borowitz D; Cystic Fibrosis Foundation, Bethesda, MD, United States; Jacobs School of Medicine and Biomedical Sciences, Buffalo, NY, United States.
J Cyst Fibros ; 18(3): 375-377, 2019 05.
Article em En | MEDLINE | ID: mdl-30503031
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.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Pesquisa / Administração dos Cuidados ao Paciente / Saúde Mental / Efeitos Psicossociais da Doença / Fibrose Cística / Pesquisa Biomédica Tipo de estudo: Prognostic_studies Limite: Humans País/Região como assunto: America do norte Idioma: En Revista: J Cyst Fibros Ano de publicação: 2019 Tipo de documento: Article

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Pesquisa / Administração dos Cuidados ao Paciente / Saúde Mental / Efeitos Psicossociais da Doença / Fibrose Cística / Pesquisa Biomédica Tipo de estudo: Prognostic_studies Limite: Humans País/Região como assunto: America do norte Idioma: En Revista: J Cyst Fibros Ano de publicação: 2019 Tipo de documento: Article