Without patient information, researchers cannot develop the drugs, gene therapies, and clinical trials needed for Charcot-Marie-Tooth (CMT) and other inherited neuropathies. That is why the Hereditary Neuropathy Foundation (HNF) created the Global Registry for Inherited Neuropathies (GRIN). The registry collects historical, clinical, and genetic information from patients diagnosed with the various forms of inherited neuropathies to help advance therapy development for these progressive disorders.

We understand that some people may have questions or concerns before joining. Below are answers to the most common ones.

Who can sign up?

Anyone diagnosed with Charcot-Marie-Tooth disease or a related inherited neuropathy.

What if I am physically unable to complete the registration?

Caregivers, family members, or friends can register on your behalf.

Do I need to update my information after registering?

Yes. We ask that you update your profile whenever there is new information about your condition, recent diagnostic tests, or a new healthcare provider. If you indicated that GRIN may contact you, the GRIN Coordinator will periodically reach out by email or phone with update reminders. The most common reasons for contact are an incomplete profile or a new question added to the questionnaire that requires your attention.

Will my information remain private?

Yes. Only approved principal investigators and registry personnel can access your information.

What kind of information is collected?

The registry collects information about your symptom history, general health, diagnostic testing, clinical assessments, and family history.

When can I join?

Today. There is no better time than now to join GRIN and help find cures and treatments for all hereditary neuropathies.