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North American Mitochondrial Disease Consortium Patient Registry and Biorepository (NAMDC)
RecruitingObservational studyHealthy volunteers welcome
Who can join
All ages · All sexes · Healthy volunteers welcome
Full eligibility criteria
Inclusion Criteria: * 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. Exclusion Criteria: * Patients not suspected of having a mitochondrial disorder * Patients not suspected of carrying a mitochondrial DNA or nuclear DNA mutation that affects mitochondrial function.
About the study
The North American Mitochondrial Disease Consortium (NAMDC) maintains a patient contact registry and tissue biorepository for patients with mitochondrial disorders.
Sponsor: Columbia University · Participants: 1,000 · Started: Jan 31, 2011
Contact the study team
- Michio Hirano, MD · Phone: 12123051048
- Kristin Engelstad, MS · Phone: 12123056834
Official record on ClinicalTrials.gov — NCT01694940
Locations in the U.S.
| California | University of California San Diego, San Diego Lucile Packard Children's Hospital, Stanford |
| Colorado | Children's Hospital of Colorado, Aurora |
| District of Columbia | Children's National Medical Center, Washington D.C. |
| Florida | University of Florida, Gainsville |
| Massachusetts | Massachusetts General Hospital, Boston |
| Minnesota | Mayo Clinic, Rochester |
| New York | Columbia University Medical Center, New York Virtual Site (Remote enrollment), New York |
| Ohio | Akron Children's Hospital, Akron Cleveland Clinic, Cleveland Case Western Reserve University, Clevland |
| Pennsylvania | The Children's Hospital of Philadelphia, Philadelphia Children's Hospital of Pittsburgh, Pittsburgh |
| Texas | Baylor College of Medicine, Houston |
| Washington | Seattle Children's Hospital and Regional Medical Center, Seattle |
Conditions
- Mitochondrial Diseases
- Mitochondrial Myopathies
- Brain Diseases
- Stroke
- Diabetes
- Hearing Disorders and Deafness
- Leukoencephalopathies
From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.