TY - JOUR
T1 - Aligning patients' needs and research priorities towards a comprehensive CF research program
AU - Noordhoek, Jacquelien J.
AU - Gulmans, Vincent A.M.
AU - Heijerman, Harry G.M.
AU - van der Ent, Cornelis K.
N1 - Funding Information:
The authors wish to acknowledge all Dutch people with CF and their parents, participants of the patients/parents review group, co-members of the HIT CF Steering group (Associate Prof J. Beekman, Prof I. Braakman, Prof H. Tiddens, Associate Prof H. de Jonge, Associate Prof B. Scholte), clinicians and researchers of all Dutch CF Centers.
Publisher Copyright:
© 2019 European Cystic Fibrosis Society.
Copyright:
Copyright 2019 Elsevier B.V., All rights reserved.
PY - 2019/5/1
Y1 - 2019/5/1
N2 - The Dutch CF Foundation started to focus on scientific research thirteen years ago. The patient organization defined the patients perspective and unmet needs bottom-up, and through a structured process. The patients research priorities were matched with the research priorities of Dutch basic scientists and clinicians. The Dutch patient organization facilitated the process, in which mutual dependency between patients, scientists and clinicians is the keyword. The, at that time initiated dialogue, maintained. Subsequently a research program called “HIT CF” was composed and executed over five years. HIT CF was financially supported mainly by the patient community and some other stakeholders.
AB - The Dutch CF Foundation started to focus on scientific research thirteen years ago. The patient organization defined the patients perspective and unmet needs bottom-up, and through a structured process. The patients research priorities were matched with the research priorities of Dutch basic scientists and clinicians. The Dutch patient organization facilitated the process, in which mutual dependency between patients, scientists and clinicians is the keyword. The, at that time initiated dialogue, maintained. Subsequently a research program called “HIT CF” was composed and executed over five years. HIT CF was financially supported mainly by the patient community and some other stakeholders.
KW - Patient participation
KW - Patient perspective
KW - Research priorities
UR - https://www.scopus.com/pages/publications/85063257956
U2 - 10.1016/j.jcf.2019.03.008
DO - 10.1016/j.jcf.2019.03.008
M3 - Article
C2 - 30926323
AN - SCOPUS:85063257956
SN - 1569-1993
VL - 18
SP - 382
EP - 384
JO - Journal of Cystic Fibrosis
JF - Journal of Cystic Fibrosis
IS - 3
ER -