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
- Hamilton, CanadaSee the site
AI summary: who the study is looking for
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
Read by machine on 12 November 2026.
Where in Canada
- McMaster UniversityHamilton, CanadaContact: Mark Tarnopolsky, MDTaking 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?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorTrial 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.