Aligning patients' needs and research priorities towards a comprehensive CF research program
Publication date
2019-05-01
Authors
Noordhoek, Jacquelien J.
Gulmans, Vincent A.M.
Heijerman, H.
van der Ent, Cornelis K.
Editors
Advisors
Supervisors
Document Type
Article
Metadata
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License
taverne
Abstract
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.
Keywords
Patient participation, Patient perspective, Research priorities, Taverne, Pediatrics, Perinatology, and Child Health, Pulmonary and Respiratory Medicine
Citation
Noordhoek, J J, Gulmans, V A M, Heijerman, H G M & van der Ent, C K 2019, 'Aligning patients' needs and research priorities towards a comprehensive CF research program', Journal of Cystic Fibrosis, vol. 18, no. 3, pp. 382-384. https://doi.org/10.1016/j.jcf.2019.03.008