The North American Mitochondrial Disease Consortium (NAMDC), consisting of several centers of excellence in the study and treatment of mitochondrial disease, maintains a Clinical Patient Registry. The NAMDC Registry collects information to help scientists learn more about mitochondrial diseases and their potential causes.

NAMDC is part of the Rare Disease Clinical Research Network (RDCRN), a project of the National Institutes of Health Office of Rare Diseases. For more information on NAMDC and its research activities, see the RDCRN web site for NAMDC.

NAMDC’s main research project is a Clinical Patient Registry. The NAMDC Registry collects information on patients who have been diagnosed with a mitochondrial disorder. The purpose of the patient registry is twofold:

1) to have ready access to patients contact information for upcoming research studies, and
2) to have ready access to patient clinical data for research studies.

For more information on NAMDC you can download this brochure.

To date, NAMDC has enrolled over one thousand patients from sixteen different NAMDC centers around the country.

If you are not near one of the sixteen NAMDC centers, you may be able to enroll remotely. To do this click the Contact Us button, or you can create an account to submit copies of your medical records which will be reviewed by the NAMDC Virtual Site Investigator. Registration is only authorized for people with a confirmed diagnosis of a Mitochondrial Disease, are a carrier of a known mitochondrial DNA or nuclear gene mutation(s), or are the parent or guardian of a child with a confirmed Mitochondrial Disease.