Patient Engagement and Co-creation of Rare Disease Research: Lessons from the Global Moyamoya Patient Registry (P12-14.013)
To describe key findings from the Global Moyamoya Patient Registry (GMPR) to date; and to use the GMPR as a model for patient co-created research to advance rare disease longterm outcomes research.
Authors
- Roxanne Houle
- Catherine Stratton (ORCID: https://orcid.org/0000-0002-1841-4565)
- Dean Houle
- Sophia Kocher
Institutions
- 3M (United States) (US)
- Duke University (US)
Publication Details
- Journal
- Neurology
- Published
- 2025-04-07
- DOI
- https://doi.org/10.1212/wnl.0000000000212601
- Primary Topic
- Moyamoya disease diagnosis and treatment
- Type
- article
- Field-Weighted Citation Impact
- 0.00