Developing a community-led rare disease ELSI research agenda.

ABSTRACT:

Background

Research priorities are best defined through engagement with communities who will be impacted by the research and have lived experience of the topics to be studied. We aimed to establish a pediatric rare disease community stakeholder group and empower them in (1) eliciting perspectives from affected families in the wider region and (2) synthesizing collective ideas into a research agenda focused on shared ethical, legal, and social implications (ELSI) across rare disease.

Methods

This two-year project utilized a community-centered approach to engage rare disease community members as equal partners in developing a research agenda for ELSI in rare disease. We established "Rare Voices" (RV), a 22-member stakeholder group of patients, parents, clinicians and researche

SUBMITTER: Berrios C 

PROVIDER: S-EPMC10801933 | biostudies-literature | 2024 Jan

REPOSITORIES: biostudies-literature