North American Mitochondrial Disease Consortium Patient Registry and Biorepository (NAMDC)

What this study is about

The North American Mitochondrial Disease Consortium (NAMDC) maintains a patient contact registry and tissue biorepository for patients with mitochondrial disorders.

Who can join (things the study team will check)

✅ You may be able to join if…

• Patients diagnosed with or suspected to have a mitochondrial disorder
• Adult carriers of known mitochondrial DNA mutations
• Patients with laboratory analysis indicative of a mitochondrial disorder.
• Medical information and tissue samples are also accepted from deceased individuals who fulfill the above criteria.

🚫 You may not be able to join if…

• Patients not suspected of having a mitochondrial disorder
• Patients not suspected of carrying a mitochondrial DNA or nuclear DNA mutation that affects mitochondrial function.

Where this trial is running

• University of California San Diego, San Diego, California, United States
• Lucile Packard Children's Hospital, Stanford, California, United States
• Children's Hospital of Colorado, Aurora, Colorado, United States
• Children's National Medical Center, Washington D.C., District of Columbia, United States
• University of Florida, Gainsville, Florida, United States
• Massachusetts General Hospital, Boston, Massachusetts, United States
• Mayo Clinic, Rochester, Minnesota, United States
• Columbia University Medical Center, New York, New York, United States
• Virtual Site (Remote enrollment), New York, New York, United States
• Akron Children's Hospital, Akron, Ohio, United States
• Cleveland Clinic, Cleveland, Ohio, United States
• Case Western Reserve University, Clevland, Ohio, United States

+ 5 more sites.

Who to contact

Michio Hirano, MD · 12123051048 · NAMDC@columbia.edu

It's completely normal to call and ask questions before deciding anything. Mention the study ID: NCT01694940.