Developing a community-led rare disease ELSI research agenda.
Berrios C, McBeth M, Bradley-Ewing A, Schuetz N, Campbell A, Talebizadeh Z, Garrett JR, Falicov T, Martinez F; Rare Voices Advisory Group; Hurley EA.
Berrios C, et al.
Orphanet J Rare Dis. 2024 Jan 22;19(1):23. doi: 10.1186/s13023-023-02986-x.
Orphanet J Rare Dis. 2024.
PMID: 38254122
Free PMC article.
Review.
We used established measures to assess RV member engagement and satisfaction. RESULTS: From 14 listening sessions with parents (n = 52) and teen patients (n = 13), RV identified eight core research topics as most important for future rare disease research: coordinat …
We used established measures to assess RV member engagement and satisfaction. RESULTS: From 14 listening sessions with parents (n = 5 …