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

Sponsored by Columbia University

About this study

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

Mitochondrial diseases comprise a group of relatively rare (\~1 in 5000 adults) but very serious genetic disorders. Mitochondria are often called the "powerhouses of the cell" because they provide the energy our cells need to live. Mitochondria have their own DNA (mtDNA), but they also rely on DNA from the nucleus (nDNA). Mitochondrial diseases are caused by mutations in either mitochondrial or nuclear DNA that result in poorly functioning mitochondria. This can cause a variety of symptoms including muscle weakness, seizures, mental retardation, dementia, hearing loss, blindness, strokes, diabetes, and premature death. Most mitochondrial diseases are progressive, and we are unable to cure most of these diseases with currently available treatments. Research into mitochondrial diseases has …

Where this study is enrolling (16)

  • University of California San Diego

    San Diego, California

    I'm interested

  • Lucile Packard Children's Hospital

    Stanford, California

    Call 1-650-723-6858

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  • Children's Hospital of Colorado

    Aurora, Colorado

    Call 3037242351

    This research site can be reached directly by phone. Call to ask about this study.

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  • Children's National Medical Center

    Washington D.C., District of Columbia

    I'm interested

  • University of Florida

    Gainsville, Florida

    I'm interested
Show all 16 locations
Who can participate

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.

Only the research team can confirm whether you qualify. The intake questionnaire is the best way to find out.

Completing a questionnaire on Clinably does not enroll you in a clinical trial or confirm your eligibility. Only the research team can determine whether you qualify to participate. These results are based on the information you provide and are intended to help you start a conversation with the research team.

Trial data sourced from ClinicalTrials.gov.