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J Cyst Fibros ; 18(3): 375-377, 2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-30503031

RESUMO

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.


Assuntos
Pesquisa Biomédica , Efeitos Psicossociais da Doença , Fibrose Cística , Saúde Mental/normas , Administração dos Cuidados ao Paciente , Pesquisa , Atitude do Pessoal de Saúde , Atitude Frente a Saúde , Pesquisa Biomédica/métodos , Pesquisa Biomédica/organização & administração , Fibrose Cística/microbiologia , Fibrose Cística/psicologia , Fibrose Cística/terapia , Desenvolvimento de Medicamentos/métodos , Humanos , Avaliação das Necessidades , Administração dos Cuidados ao Paciente/métodos , Administração dos Cuidados ao Paciente/normas , Pesquisadores , Inquéritos e Questionários , Estados Unidos
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