Skip to content
Bored Studies
RecruitingAccepts healthy volunteers

North American Mitochondrial Disease Consortium Patient Registry and Biorepository (NAMDC)

Columbia University · with National Institute of Neurological Disorders and Stroke (NINDS) · NCT01694940

View Study & Apply (opens in a new tab)

Opens the official ClinicalTrials.gov record, with the study team’s contacts. Bored Studies doesn’t enroll anyone.

Key facts

Compensation
Not posted. Ask the study team before screening.
Who can join
Any age listed · All sexes
Healthy volunteers
Accepted
Study type
Observational
Target enrollment
1000
US sites recruiting
16
Study start
January 31, 2011
Record last updated
February 4, 2026

Status re-checked against ClinicalTrials.gov within the last 12 hours.

What the study is about

The North American Mitochondrial Disease Consortium (NAMDC) maintains a patient contact registry and tissue biorepository for patients with mitochondrial disorders.

Conditions: Mitochondrial Disorders; Mitochondrial Genetic Disorders; Mitochondrial Diseases; Disorder of Mitochondrial Respiratory Chain Complexes; Deletion and Duplication of Mitochondrial DNA

Eligibility criteria

Copied from the official record. The study team makes the final decision at screening.

Show full criteria

Inclusion Criteria

  • 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 Criteria

  • Patients not suspected of having a mitochondrial disorder
  • Patients not suspected of carrying a mitochondrial DNA or nuclear DNA mutation that affects mitochondrial function.

Recruiting US locations

  • University of California San Diego

    San Diego, CA 92103

    Site contact: Richard Hass, MD · 18588226700 · rhass@ucsd.edu

  • Lucile Packard Children's Hospital

    Stanford, CA 94305

    Site contact: Gregory Enns, MD · 1-650-723-6858

  • Children's Hospital of Colorado

    Aurora, CO 80045

    Site contact: Johan Van Hove, MD PhD MBA · 3037242351

  • Children's National Medical Center

    Washington D.C., DC 20010

    Site contact: Andrea Gropman, MD · 202-476-3511 · agropman@cnmc.org

  • University of Florida

    Gainsville, FL 32610

    Site contact: Peter Stacpole, MD · 13522658909 · stacpool@gcrc.ufl.edu

  • Massachusetts General Hospital

    Boston, MA 02115

    Site contact: Amel Karaa, MD · 6173556117 · akaraa@partners.org

  • Mayo Clinic

    Rochester, MN 55902

    Site contact: Ralitza Garivolova, MD · 15072842511 · gavrilova.ralitza@mayo.edu

  • Columbia University Medical Center

    New York, NY 10032

    Site contact: Michio Hirano, MD · 2123051048 · namdc@columbia.edu

  • Virtual Site (Remote enrollment)

    New York, NY 10032

    Site contact: Kristin T Engelstad · 2123056834 · namdc@columbia.edu

  • Akron Children's Hospital

    Akron, OH 44308

    Site contact: Bruce Cohen, MD · 13305436048 · bcohen@chmca.org

  • Cleveland Clinic

    Cleveland, OH 44195

    Site contact: Sumit Parikh, MD · 12164441994 · parikhs@ccf.org

  • Case Western Reserve University

    Clevland, OH 44106

    Site contact: Charles Hoppel, MD · 12163683147 · charles.hoppel@case.edu

  • The Children's Hospital of Philadelphia

    Philadelphia, PA 19104

    Site contact: Marni J Falk, MD · 2155904564 · falkm@email.chop.edu

  • Children's Hospital of Pittsburgh

    Pittsburgh, PA 15224

    Site contact: Amy Goldstein, MD · 1-412-692-5520

  • Baylor College of Medicine

    Houston, TX 77030

    Site contact: William Craigen, MD · 17137988305 · wcraigen@bcm.edu

  • Seattle Children's Hospital and Regional Medical Center

    Seattle, WA 98105

    Site contact: Russell Saneto, MD · 12069872100 · russ.saneto@seattlechildrens.org

Study contacts (from the official record)

  • Michio Hirano, MD · 12123051048 · NAMDC@columbia.edu
  • Kristin Engelstad, MS · 12123056834 · NAMDC@columbia.edu
All diabetes studies in California →
North American Mitochondrial Disease Consortium Patient Registry… (NCT01694940) | Bored Studies