Aligning patients' needs and research priorities towards a comprehensive CF research program.
J Cyst Fibros
; 18(3): 382-384, 2019 05.
Article
in En
| MEDLINE
| ID: mdl-30926323
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.
Key words
Full text:
1
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Research
/
Attitude of Health Personnel
/
Attitude to Health
/
Cystic Fibrosis
/
Biomedical Research
Type of study:
Evaluation_studies
Aspects:
Determinantes_sociais_saude
/
Patient_preference
Limits:
Humans
Country/Region as subject:
Europa
Language:
En
Journal:
J Cyst Fibros
Year:
2019
Document type:
Article