Frontlight ResearchEarly access
Taking people in United StatesNo phase
Registry and biorepository for people with mitochondrial disease
Collects health information and samples from people with mitochondrial disorders for future research.
Key facts
- Who runs it
- Columbia University
- 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 sitesAlso in 1 other country, 1 site
- Trial code
- Registry title
- North American Mitochondrial Disease Consortium Patient Registry and Biorepository (NAMDC)
- Status
- Recruiting
- People taking part
- 1,000 people, planned
- Started
- 31 Jan 2011
- Expected to end
- 31 Dec 2026
- Type of study
- Observational
- Record updated
- 4 February 2026
Who can take part
AI summary
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
The trial is looking for people with a mitochondrial disorder or a suspected one, and adult carriers of known mitochondrial DNA mutations. It keeps a patient registry and a tissue bank.
- Sex
- All sexes can join.
- Disease stage
- Diagnosed or suspected mitochondrial disorder, or lab results that point to one.
- Biomarker or test result
- Adult carriers of known mitochondrial DNA mutations can join. Lab analysis that points to a mitochondrial disorder also counts.
Main reasons for not taking part
- People not suspected of having a mitochondrial disorder
- People not suspected of carrying a mitochondrial DNA or nuclear DNA mutation that affects mitochondrial function
The registry criteria, word for word
Show all 6 criteriaShow less
Who can take part
- 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
Who cannot take part
- 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 in United States
Also in 1 other country, 1 site
- Akron Children's HospitalAkron, United StatesContact: Bruce Cohen, MDTaking people
- Children's Hospital of ColoradoAurora, United StatesContact: Johan Van Hove, MD PhD MBATaking people
- Massachusetts General HospitalBoston, United StatesContact: Amel Karaa, MDTaking people
- Cleveland ClinicCleveland, United StatesContact: Sumit Parikh, MDTaking people
- Case Western Reserve UniversityClevland, United StatesContact: Charles Hoppel, MDTaking people
- University of FloridaGainsville, United StatesContact: Peter Stacpole, MDTaking people
- Baylor College of MedicineHouston, United StatesContact: William Craigen, MDTaking people
- Columbia University Medical CenterNew York, United StatesContact: Michio Hirano, MDTaking people
- Virtual Site (Remote enrollment)New York, United StatesContact: Kristin T EngelstadTaking people
- The Children's Hospital Of PhiladelphiaPhiladelphia, United StatesContact: Marni J Falk, MDTaking people
- Children's Hospital of PittsburghPittsburgh, United StatesContact: Amy Goldstein, MDTaking people
- Mayo ClinicRochester, United StatesContact: Ralitza Garivolova, MDTaking people
- University of California San DiegoSan Diego, United StatesContact: Richard Hass, MDTaking people
- Seattle Children's Hospital and Regional Medical CenterSeattle, United StatesContact: Russell Saneto, MDTaking people
- Lucile Packard Children's HospitalStanford, United StatesContact: Gregory Enns, MDTaking people
- Children's National Medical CenterWashington D.C., United StatesContact: Andrea Gropman, MDTaking people
About the trial
What the trial wants to find out
The North American Mitochondrial Disease Consortium (NAMDC) maintains a patient contact registry and tissue biorepository for patients with mitochondrial disorders.
The group in the trial
- Mitochondrial Disease Patients
Patients with possible or known mitochondrial disorders. Patients who are known carriers of mitochondrial or nuclear DNA mutations involved in mitochondrial function.
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?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorData and sources
- Registry record
- Listed on ClinicalTrials.gov.
- Official title
- North American Mitochondrial Disease Consortium Patient Registry and Biorepository (NAMDC)
- Plain-language title
- Registry and biorepository for people with mitochondrial diseaseGenerated from the registry record. The registry title is the official one.
- AI summary
- From the trial's eligibility criteria. Read by machine on 12 November 2026.
- Record updated
- 4 February 2026