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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.
Conditions:
🦠 Mitochondrial Disorders 🦠 Mitochondrial Genetic Disorders 🦠 Mitochondrial Diseases 🦠 Disorder of Mitochondrial Respiratory Chain Complexes 🦠 Deletion and Duplication of Mitochondrial DNA
🗓️ Study Start (Actual) December 2010
🗓️ Primary Completion (Estimated) December 2025
✅ Study Completion (Estimated) December 2025
👥 Enrollment (Estimated) 1000
🔬 Study Type OBSERVATIONAL
📊 Phase N/A
Locations:
📍 San Diego, California, United States
📍 Stanford, California, United States
📍 Aurora, Colorado, United States
📍 Washington, District of Columbia, United States
📍 Gainesville, Florida, United States
📍 Boston, Massachusetts, United States
📍 Rochester, Minnesota, United States
📍 New York, New York, United States
📍 New York, New York, United States
📍 Akron, Ohio, United States
📍 Cleveland, Ohio, United States
📍 Cleveland, Ohio, United States
📍 Philadelphia, Pennsylvania, United States
📍 Pittsburgh, Pennsylvania, United States
📍 Houston, Texas, United States
📍 Seattle, Washington, United States
📍 Hamilton, Ontario, Canada
More locations available...

📋 Eligibility Criteria

Description

    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.
Ages Eligible for Study: N/A to N/A (CHILD, ADULT, OLDER_ADULT)
Sexes Eligible for Study: ALL
Accepts Healthy Volunteers: Yes

🗓️ Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

  • First Submitted 25 September 2012
  • First Submitted that Met QC Criteria 25 September 2012
  • First Posted 27 September 2012

Study Record Updates

  • Last Update Submitted that Met QC Criteria 28 July 2022
  • Last Update Posted 1 August 2022
  • Last Verified July 2022
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