North American Mitochondrial Disease Consortium Patient Registry and Biorepository (NAMDC)
NCT ID: NCT01694940
Last Updated: 2026-01-23
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
1000 participants
OBSERVATIONAL
2010-12-31
2026-12-31
Brief Summary
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Detailed Description
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Research into mitochondrial diseases has been hampered by the low frequency of these disorders and by under-diagnosis by clinicians. This has hindered patient recruitment for research studies and clinical trials. The North American Mitochondrial Disease Consortium (NAMDC) was established to help surmount these issues. Led jointly by Drs. Michio Hirano and Salvatore DiMauro, NAMDC is a consortium of several clinicians and researchers with an interest in mitochondrial disease research in the United States and Canada.
By creating a mechanism for the sharing of patient samples with researchers, data and patient contact information, NAMDC will make it easier to conduct clinical and basic laboratory research.
Patient information will be shared through the use of the "Patient Data Registry," a specially-designed database, and patient tissue samples will be shared through the use of the "Patient Sample Biorepository", a storage facility in which patient-derived biological samples will be maintained. The Registry and the Biorepository will hopefully accelerate progress in the understanding and treatment of mitochondrial disease.
Patients can enroll at any of the NAMDC member sites. A web-based remote enrollment is also available at www.namdc.org for eligible patients who reside far from any of the NAMDC participating sites.
Conditions
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Study Design
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COHORT
PROSPECTIVE
Study Groups
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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.
No interventions assigned to this group
Eligibility Criteria
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Inclusion Criteria
* 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 carrying a mitochondrial DNA or nuclear DNA mutation that affects mitochondrial function.
ALL
Yes
Sponsors
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National Institute of Neurological Disorders and Stroke (NINDS)
NIH
Columbia University
OTHER
Responsible Party
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Michio Hirano, MD
Professor of Neurology
Principal Investigators
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Michio Hirano, MD
Role: STUDY_DIRECTOR
Columbia University
Locations
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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
The Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, United States
Children's Hospital of Pittsburgh
Pittsburgh, Pennsylvania, United States
Baylor College of Medicine
Houston, Texas, United States
Seattle Children's Hospital and Regional Medical Center
Seattle, Washington, United States
McMaster University
Hamilton, Ontario, Canada
Countries
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Central Contacts
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Facility Contacts
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Gregory Enns, MD
Role: primary
Johan Van Hove, MD PhD MBA
Role: primary
Amy Goldstein, MD
Role: primary
Related Links
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Rare Disease Clinical Research Network NAMDC Home Page
Other Identifiers
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AAAF4597
Identifier Type: -
Identifier Source: org_study_id
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