Patients’ research priorities and participation in primary ciliary dyskinesia research
Yin Ting Lam, Laura Behan, Katie Dexter, Lucy Dixon, Claudia E Kuehni, Leonie Daria Schreck, Jane S Lucas, Myrofora Goutaki · 2025
Read Patients’ research priorities and participation in primary ciliary dyskinesia research by Yin Ting Lam, Laura Behan, Katie Dexter, Lucy Dixon, Claudia E Kuehni, Leonie Daria Schreck, Jane S Lucas, Myrofora Goutaki (2025) in the Tower of Babel, a free online library of public-domain works preserved in clean, searchable text. No sign-up. The full text is served as a plain-text file at a predictable URL, where text is present: https://antarctic-labs.com/tower-of-babel/pmc-12706200.txt.
Description
Yin Ting Lam and co-authors ask patients what research should study in a 2025 paper. Their topic is primary ciliary dyskinesia, a rare disease where the tiny hairs that clear airways fail. People who live with a chronic disease often rank questions differently from doctors. In a rare disease with thin funding, that ranking matters even more.
The team first held deep interviews with patients and caregivers. Themes from those talks became an online survey, offered in eight languages with help from support groups. A total of 399 people from 29 countries replied. Nearly half had already taken part in research. Top wishes included new treatments and more knowledge on mental health, fertility, and the burden of daily care.
Catalog record
| CREATOR | Yin Ting Lam, Laura Behan, Katie Dexter, Lucy Dixon, Claudia E Kuehni, Leonie Daria Schreck, Jane S Lucas, Myrofora Goutaki |
|---|---|
| YEAR | 2025 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 40 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |