Aligning patients' needs and research priorities towards a comprehensive CF research program

Jacquelien J. Noordhoek*, Vincent A.M. Gulmans, Harry G.M. Heijerman, Cornelis K. van der Ent

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

2 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)382-384
Number of pages3
JournalJournal of Cystic Fibrosis
Volume18
Issue number3
DOIs
Publication statusPublished - 1 May 2019

Keywords

  • Patient participation
  • Patient perspective
  • Research priorities

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