Global Registry for Inherited Neuropathies
HNF is relaunching GRIN for January 2018.
HNF’s Global Registry for Inherited Neuropathies (GRIN) collects historical, clinical, and genetic information on Charcot-Marie-Tooth and Inherited Neuropathy patients to help advance therapy development for these debilitating disorders. This initiative supports HNF’s commitment and dedication to developing treatments and discovering cures for CMT and other INs.
Why should you join GRIN?
It’s pretty simple…
We need you!
Researchers won’t have the essential and necessary patient information to develop the drugs, gene therapies, and clinical trials for CMT and other Inherited Neuropathies (IN) unless you participate!
As our registry grows, we exponentially gain greater insights for researchers into the CMT community and allow more precise targeting for specific conditions. Researchers can study why individuals have different symptoms. Scientists can learn how a particular mutation type may lead to different or unique symptoms.
By completing your profile, your information will be utilized to advance research and clinical trials that could lead to future treatments and cures. Participation in the registry also helps researchers learn about the efficacy of treatments within a given patient population.
Ready to join?
Anyone diagnosed with CMT or other IN can join the GRIN registry. Your information is always kept confidential: only approved research investigators and registry personnel can see your information.
If you are already a participant, but haven’t completed your questionnaire, please update your profile to ensure your most recent information is included in the registry.
With all of the current positive research momentum, there is no better time than right now to join GRIN! Become a part of the effort to find the treatments and cures for all inherited neuropathies!