🏛️ Verified NIH Record • Updated 2026-02-02
North American Mitochondrial Disease Consortium Patient Registry and Biorepository (NAMDC) (NCT01694940)
🟢 Recruiting Interventional Protocol 📊 Observational Clinical Research Sponsor: Columbia University
🩺 Plain-English Summary (8th-Grade Level)
The North American Mitochondrial Disease Consortium (NAMDC) maintains a patient contact registry and tissue biorepository for patients with mitochondrial disorders.
Who can join: Review the eligibility criteria below.
Location: University of California San Diego — San Diego, California
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria ↗
📍 All Participating Trial Locations (17 Sites)
- University of California San Diego — San Diego, California
- Lucile Packard Children's Hospital — Stanford, California
- Children's Hospital of Colorado — Aurora, Colorado
- Children's National Medical Center — Washington D.C., District of Columbia
- University of Florida — Gainsville, Florida
- Massachusetts General Hospital — Boston, Massachusetts
- Mayo Clinic — Rochester, Minnesota
- Columbia University Medical Center — New York, New York
- Virtual Site (Remote enrollment) — New York, New York
- Akron Children's Hospital — Akron, Ohio
- Cleveland Clinic — Cleveland, Ohio
- Case Western Reserve University — Clevland, Ohio
- The Children's Hospital of Philadelphia — Philadelphia, Pennsylvania
- Children's Hospital of Pittsburgh — Pittsburgh, Pennsylvania
- Baylor College of Medicine — Houston, Texas
- Seattle Children's Hospital and Regional Medical Center — Seattle, Washington
- McMaster University — Hamilton, Ontario
📞 Contact the Study Coordinator
Phone: (212) 305-1048
Email: NAMDC@columbia.edu
Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.
💰 Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA § 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
Explore by condition: All Mitochondrial Disorders clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Contact the study coordinator using the phone/email above.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.