North American Mitochondrial Disease Consortium

Join the Contact Registry

Join the RDCRN Contact Registry for Mitochondrial Diseases

Thank you for your interest in the Contact Registry. This Contact Registry allows individuals with mitochondrial diseases to register themselves to receive information about studies conducted by the NAMDC, a member of the Rare Diseases Clinical Research Network (RDCRN).

By joining the Contact Registry, you will be asked to provide information about you (or your child) and how you can be contacted. The RDCRN will use that information in two ways:

  1. To contact individuals who might qualify for participation in a research study
  2. To learn more about your disease. This will help these researchers better design and conduct clinical studies.

This informaton is collected by the RDCRN Data Management and Coordinating Center and is not shared with anyone without your expressed permission.

You will be given the option to share the information you enter into the RDCRN Contact Registry directly with NAMDC study doctors and research staff.

How do I Join?

  1. Click on your disorder name below
  2. You will then be asked to read and agree to the Authorization Agreement
  3. After you have read and agreed to the authorization, the Contact Registry form will appear on your screen. The Contact Registry asks you for information such as your (or your child's) name, address, birth date, place of birth, E-mail address, or items relevant to your (or your child's) disorders.
  4. Once you have registered, you will also be asked to answer additional questions about your disease experiences.

AID: Aminoglycoside-Induced Deafness

Alpers syndrome

Barth Syndrome

Cardioencephalomyopathy

CoQ Deficiency

CPEO: Chronic Progressive External Ophthalmoplegia

DAD: Diabetes and Deafness

Encephalopathy

Encephalomyopathy

FBSN: Familial Bilateral Striatal Necrosis

Hepatocerebral disease

KSS: Kearns-Sayre syndrome

Leigh Syndrome

Leukoencephalopathy

LHON: Leber Hereditary Optic Neuropathy and Dystonia

LHON-Plus: Leber Hereditary Optic Neuropathy Plus

MELAS: Mitochondrial Encephalopathy Lactic Acidosis with Stroke-like Episodes

MERRF: Myoclonus Epilepsy Ragged-red Fibers

MILS: Maternally Inherited Leigh Syndrome

MNGIE: Mitochondrial Neurogastrointestinal Encephalomyopathy

Mitochondrial DNA Depletion Syndrome

Multiple Deletions of Mitochondrial DNA

NARP: Neuropathy, Ataxia and Retinitis Pigmentosa Syndrome

Pearson Syndrome

SANDO: Sensory Ataxia Neuropathy

Dysarthria Ophthalmoplegia

Complex I Deficiency

Complex II (SDH) Deficiency

Complex III Deficiency

Complex IV Deficiency

Complex V Deficiency

Multiple Respiratory Chain Enzyme Deficiencies


Mitochondrial Disease, Not Classified


Frequently Asked Questions about the RDCRN Contact Registry

What are the benefits of joining the Contact Registry?

You will:

  • Receive news about new ongoing clinical studies for your disease
  • Receive information about your disease
  • Receive information on activities from affiliated awareness and advocacy groups
  • Have the opportunity to share information about yourself with scientists and partient advocacy foundations
  • You may choose to be contacted directly by researchers to participate in clinical studies

Who Can Join the Contact Registry?

We encourage patients from all 50 states in the United States and every country to join the Contact Registry.

Is my information kept private?

Yes. Once you have entered and submitted this information online, the data will be stored in a secure, computerized database.

No personal identifying information (such as your name, address, telephone number) will be given to anyone without your expressed approval.

Option to Share Your Contact Information

You now have the choice to share your contact information with other researchers and with patient advocacy groups. With this information, these researchers or groups will be able to contact you directly to ask whether you'd be interested in participating in upcoming research studies that should advance our ability to treat people with your disease. No personal identifying information (such as your name, address, telephone number) will be given to anyone without your expressed approval