Patients’ research priorities and participation in primary ciliary dyskinesia research
We found that people with PCD are motivated to participate in research when they are informed appropriately and invited. Their main research priorities relate to developing new treatments or improving the evidence base for existing treatments. Our findings will help the PCD research community to improve patient engagement in research and to draw common priorities together with the people who live with PCD and their families.
Authors
- Claudia E. Kuehni (ORCID: https://orcid.org/0000-0001-8957-2002)
- Yin Ting Lam (ORCID: https://orcid.org/0000-0002-2380-834X)
- Myrofora Goutaki (ORCID: https://orcid.org/0000-0001-8036-2092)
- Leonie D Schreck (ORCID: https://orcid.org/0000-0001-6180-692X)
- Jane S. Lucas (ORCID: https://orcid.org/0000-0001-8701-9975)
- Katie Dexter (ORCID: https://orcid.org/0000-0003-0140-3744)
- Laura Behan (ORCID: https://orcid.org/0000-0002-0748-6141)
- Lucy Dixon (ORCID: https://orcid.org/0009-0009-8132-2119)
Institutions
- University of Bern (CH)
- University Hospital of Bern (CH)
- University Children's Hospital Zurich (CH)
- Institute of Social and Preventive Medicine (CH)
- Genomics England (GB)
- University of Southampton (GB)
Publication Details
- Journal
- BMJ Open Respiratory Research
- Published
- 2025-12-01
- DOI
- https://doi.org/10.1136/bmjresp-2025-003364
- Primary Topic
- Cystic Fibrosis Research Advances
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- National Science Foundation
- University of Bern
- Schweizerischer Nationalfonds zur Förderung der Wissenschaftlichen Forschung