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

Launched by COLUMBIA UNIVERSITY · Sep 25, 2012

Keywords

ClinConnect Summary

The North American Mitochondrial Disease Consortium (NAMDC) is conducting a study to better understand mitochondrial disorders, which are conditions that affect how our cells produce energy. They are creating a registry and a biorepository, which means they will collect information and tissue samples from patients who are either diagnosed with or suspected to have these disorders. This will help researchers learn more about these diseases and potentially improve treatments in the future.

If you or a family member has been diagnosed with a mitochondrial disorder, carries a known mitochondrial DNA mutation, or has test results suggesting a mitochondrial issue, you may be eligible to participate. The study is open to all genders and includes adults as well as samples from deceased individuals who meet the criteria. Participants can expect to contribute valuable information and samples that will aid in research efforts. It's important to note that individuals who do not have any suspicion of a mitochondrial disorder or mutation will not be included in this study.

Gender

ALL

Eligibility 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.