Format

Send to

Choose Destination

See 1 citation found by title matching your search:

J Cyst Fibros. 2019 May;18(3):382-384. doi: 10.1016/j.jcf.2019.03.008. Epub 2019 Mar 26.

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

Author information

1
Dutch Cystic Fibrosis Foundation (NCFS), the Netherlands. Electronic address: j.noordhoek@ncfs.nl.
2
Dutch Cystic Fibrosis Foundation (NCFS), the Netherlands.
3
University Medical Center Utrecht (UMCU), the Netherlands.

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

PMID:
30926323
DOI:
10.1016/j.jcf.2019.03.008

Supplemental Content

Full text links

Icon for Elsevier Science
Loading ...
Support Center