North American Mitochondrial Disease Consortium Patient Registry and Biorepository (NAMDC)
Status: Recruiting
Location: See all (17) locations...
Study Type: Observational
SUMMARY
The North American Mitochondrial Disease Consortium (NAMDC) maintains a patient contact registry and tissue biorepository for patients with mitochondrial disorders.
Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: t
View:
• 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.
Locations
United States
California
University of California San Diego
RECRUITING
San Diego
Lucile Packard Children's Hospital
RECRUITING
Stanford
Colorado
Children's Hospital of Colorado
RECRUITING
Aurora
Washington, D.c.
Children's National Medical Center
RECRUITING
Washington D.c.
Florida
University of Florida
RECRUITING
Gainsville
Massachusetts
Massachusetts General Hospital
RECRUITING
Boston
Minnesota
Mayo Clinic
RECRUITING
Rochester
New York
Columbia University Medical Center
RECRUITING
New York
Virtual Site (Remote enrollment)
RECRUITING
New York
Ohio
Akron Children's Hospital
RECRUITING
Akron
Cleveland Clinic
RECRUITING
Cleveland
Case Western Reserve University
RECRUITING
Clevland
Pennsylvania
The Children's Hospital of Philadelphia
RECRUITING
Philadelphia
Children's Hospital of Pittsburgh
RECRUITING
Pittsburgh
Texas
Baylor College of Medicine
RECRUITING
Houston
Washington
Seattle Children's Hospital and Regional Medical Center
RECRUITING
Seattle
Other Locations
Canada
McMaster University
RECRUITING
Hamilton
Contact Information
Primary
Michio Hirano, MD
NAMDC@columbia.edu
12123051048
Backup
Kristin Engelstad, MS
NAMDC@columbia.edu
12123056834
Time Frame
Start Date: 2011-01-31
Estimated Completion Date: 2026-12-31
Participants
Target number of participants: 1000
Treatments
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.
Authors
Xiomara Q Rosales
Related Therapeutic Areas
Sponsors
Leads: Columbia University
Collaborators: National Institute of Neurological Disorders and Stroke (NINDS)