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

Overview

  • Study type

    Observational
  • Study IDs

  • Describes the nature of a clinical study. Types include:

    • Observational study — observes people and measures outcomes without affecting results.
    • Interventional study (clinical trial) — studies new tests, treatments, drugs, surgical procedures or devices.
    • Medical records research — uses historical information collected from medical records of large groups of people to study how diseases progress and which treatments and surgeries work best.
  • Site IRB
    • Rochester, Minnesota: 17-010705
    NCT ID: NCT01694940
    Sponsor Protocol Number: NAMDC7401

About this study

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

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. If you need assistance understanding the eligibility criteria, please contact the study team.

Inclusion Criteria:

  • Patients who have been diagnosed with or are suspected of having a mitochondrial disorder.
  • Unaffected individuals with known mitochondrial DNA mutation (i.e. unaffected mutation carriers).

Exclusion Criteria:

  • Lack of known or suspected mitochondrial disease.

Participating Mayo Clinic locations

Study statuses change often. Please contact us for help.

Mayo Clinic Location Status Contact

Rochester, Minn.

Mayo Clinic principal investigator

Ralitza Gavrilova, M.D.

Contact us for the latest status

Contact information:

Kaitlin Schwartz

(507)293-9114

Schwartz.Kaitlin@mayo.edu

More information

Publications

Publications are currently not available

Study Results Summary

Not yet available

Supplemental Study Information

Not yet available

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CLS-20409244

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