RARE-X Data Collection Program
Global Genes
Patient-owned data-collection infrastructure — structured surveys, patient-reported outcomes, and cross-condition analysis — delivered in partnership with advocacy groups. It spans 85+ disorders and 124 partner groups with participants in 90+ countries; the methods were published in Genetics in Medicine in 2025.
A researcher data-request process makes the collected data usable for BTHS studies, and the cross-condition structure supports comparisons against other mitochondrial disorders.
Rare disease patient advocacy organizations become data-collection partners; researchers can submit data requests.
Program inquiry via the Global Genes RARE-X pages; researchers use the data-request form.
/grants/rare-x-data-collection-program/
Last updated August 28, 2026 · Suggest an update to this entry