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Why is your participation important?

Every patient can play an important part in helping to find out more about channelopathies: their cause, their symptoms, and potential treatments. One very important way you can help is by joining the Patient Contact Registry, and possibly taking part in clinical research.

Who Can Join the Contact Registry?

Anyone who is diagnosed with Andersen-Tawil syndrome, non-dystrophic myotonia, or episodic ataxia can join the contact registry.

How does the Contact Registry Work?

After you have read and agreed to the Authorization, the Registry form will appear on your screen. This form asks you for information such as your (or your child's) name, address, birth date, place of birth, email address, or items relevant to your (or your child's) disorders.

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.

Link to the Department of Health and Human Services Web SiteLink to the National Institutes of Health Web SiteOffice of Rare Diseases ResearchNational Institute of Neurological Disorders and Stroke Web Site