Why are we asking you to join our registry?
Without you, researchers won’t have the essential patient information to develop the drugs, gene therapy, and clinical trials for Charcot-Marie-Tooth and other inherited neuropathies.
This is why the Hereditary Neuropathy Foundation (HNF) created the Global Registry for Inherited Neuropathies (GRIN). The registry collects the historical, clinical, and genetic information on patients diagnosed with the various forms of inherited neuropathies to help advance therapy development for these debilitating disorders.
We understand there may be some hesitation joining our registry. To help mitigate any concerns, we’ve have the answers to your most common questions below:
Who can sign up?
Anyone diagnosed with Charcot-Marie-Tooth or a related inherited neuropathy.
What if I am physically unable to do the registration process?
Caregivers, family members, or friends can sign you up.
Do I need to update my information once I have completed my registration?
Yes. We ask you to update your profile with any new information on your current condition, recent diagnostic tests, or a new health care provider you are seeing.
If you answered yes allowing GRIN to contact you, the GRIN Coordinator will periodically reach out to you via email or by phone for update reminders. The most common reasons to contact you are for an incomplete profile, or a new question has been added to the questionnaire requiring your attention.
Will my information remain private?
Yes. Only approved PI’s and registry personnel can see your information.
What kind of information is collected?
The registry collects information about the history of your symptoms, general health, diagnostic testing, assessments, and family history.
When can I join?
If you are interested in joining our registry, there is no better time than right now. Come join GRIN and be on the front line helping to find cures and treatments for all hereditary neuropathies.