Rare Diseases Clinical Research Network — NAMDC collaboration
NCATS RDCRN / North American Mitochondrial Disease Consortium
The RDCRN funds multi-site consortia for natural history, biomarker, and trial-readiness research. The North American Mitochondrial Disease Consortium (NAMDC) — with a registry, biorepository, and 17 clinical sites — was not renewed for cycle 5 in NIH's Oct 2025 awards and has been running on a one-year no-cost extension, so its longer-term status is uncertain. The new-consortium NOFO has expired, with the next competition expected around 2029.
BTHS access runs through affiliation or collaboration with NAMDC, which sometimes offers pilot awards within the consortium. Given the funding uncertainty, treat it as a collaboration route rather than a dependable pipeline.
Clinical and translational investigators in mitochondrial disease seeking multi-site infrastructure, registry, or biorepository access.
Contact NAMDC/RDCRN directly to discuss affiliation, data/sample access, or pilot opportunities.
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Last updated August 28, 2026 · Suggest an update to this entry