Registry and biorepository for people with mitochondrial disease
Collects health information and samples from people with mitochondrial disorders for future research.
Plain-language title generated from the registry record
Registry title: North American Mitochondrial Disease Consortium Patient Registry and Biorepository (NAMDC)
Key facts
- Where
- Akron, Aurora, Boston, Cleveland, Clevland, Gainsville, Houston, New York, Philadelphia, Pittsburgh, Rochester, San Diego, Seattle, Stanford, and Washington D.C., United StatesSee the 16 sites
Where in United States
- Akron Children's HospitalAkron, United StatesTaking people
- Children's Hospital of ColoradoAurora, United StatesTaking people
- Massachusetts General HospitalBoston, United StatesTaking people
- Cleveland ClinicCleveland, United StatesTaking people
- Case Western Reserve UniversityClevland, United StatesTaking people
- University of FloridaGainsville, United StatesTaking people
- Baylor College of MedicineHouston, United StatesTaking people
- Columbia University Medical CenterNew York, United StatesTaking people
- Virtual Site (Remote enrollment)New York, United StatesTaking people
- The Children's Hospital Of PhiladelphiaPhiladelphia, United StatesTaking people
- Children's Hospital of PittsburghPittsburgh, United StatesTaking people
- Mayo ClinicRochester, United StatesTaking people
- University of California San DiegoSan Diego, United StatesTaking people
- Seattle Children's Hospital and Regional Medical CenterSeattle, United StatesTaking people
- Lucile Packard Children's HospitalStanford, United StatesTaking people
- Children's National Medical CenterWashington D.C., United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Columbia University
- Trial code
- NCT01694940
- Record updated
- 4 February 2026
- Original description
The North American Mitochondrial Disease Consortium (NAMDC) maintains a patient contact registry and tissue biorepository for patients with mitochondrial disorders.Read full original descriptionShow less
North American Mitochondrial Disease Consortium Patient Registry and Biorepository (NAMDC)
The North American Mitochondrial Disease Consortium (NAMDC) maintains a patient contact registry and tissue biorepository for patients with mitochondrial disorders.
Inclusion: 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: Patients not suspected of having a mitochondrial disorder; Patients not suspected of carrying a mitochondrial DNA or nuclear DNA mutation that affects mitochondrial function.