Welcome to Global Registry for Inherited Neuropathies (GRIN)
Why should you join GRIN?
It’s pretty simple…
We need YOU!
Without your participation, researchers won’t have the essential and necessary patient information to develop drugs, gene therapies, and clinical trials for Charcot-Marie-Tooth and other Inherited Neuropathies!
Choose your path to GRIN
Click button above to request an account
Click button above and login.
Click button above, then click “Forgot Password”. If you don’t receive an email within 5 minutes, click on “New to GRIN” button above.
As GRIN grows, we exponentially gain greater insights from you as patients to help accelerate therapies for Charcot-Marie-Tooth (CMT) and Inherited Neuropathies. This is an incredible opportunity for you to participate in CMT and Inherited Neuropathies Patient-Focused Research.
Your vital data allows for researchers to study why individuals experience different symptoms and address what is most important to patients when thinking about drug development. Scientists can also learn how a particular mutation type may lead to different or unique symptoms helping us to develop treatments for all types of CMT and Inherited Neuropathies.
By completing your profile, your de-identified information will be utilized to advance research and support clinical trial designs. As a registrant, you will be informed when you may be eligible for clinical trials.
These Patient-Reported Outcomes Studies will enhance therapy development in collaboration with our industry partners. By informing Healthcare Providers and others with your critical data, we can work to improve diagnosis and enhance patient care.
Anyone diagnosed with CMT or other Inherited Neuropathies can join GRIN. Your information is always kept confidential: only approved research investigators and industry partners can see your de-identified information.
If you are already a participant, we still need you! It’s important to update your profile and participate in many of our Patient-Reported Outcomes Research Studies.
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!
Breaking News for SORD Deficiency Patients
The INSPIRE trial is a Phase 3 double-blind placebo-controlled registrational study evaluating the effect of once-daily (QD) oral govorestat (AT-007) in 56 patients aged 16-55 with SORD Deficiency in the US and Europe.
HNF Contributes CMTRN Data to C-Path’s RDCA-DAP
HNF Contributes CMTRN Data to C-Path’s RDCA-DAP, Strengthening Research Capabilities for Inherited Neuropathies Integration of CMTRN data into RDCA-DAP promises new insights into Charcot-Marie-Tooth disease and related neuropathies, fueling advancements in treatment...
New CMT gene discovery, CRYAB
Do you have late onset autosomal dominant CMT2 – subtype unknown, with breathing involvement, unexplained cardiac complications, and/or congenital cataracts?
HNF’s CMT Genie: Because genetic testing for CMT has never been more critical
Collaborative efforts between researchers, healthcare providers, and patients, facilitated by the Hereditary Neuropathy Foundation, has created a synergy that has accelerated the pace of discovery.
CMT Biobank: We Need Your HELP!
HNF is excited to continue collecting samples for researchers and industry to help develop treatments for CMT.
Reducing Genetic Testing Barriers for the Charcot-Marie-Tooth Community
Hereditary Neuropathy Foundation Partners with InformedDNA® on CMT Genie Project
HNF Partners with InformedDNA® on CMT Genie Project
a patient-initiated at-home genetic testing program, providing faster and more equitable access to critical genetic care for the CMT community and their health care providers.
ABCs of CMT Pain Management Guide
ABCs of CMT Pain Management,” a comprehensive guide that is a direct product of the Global Registry for Inherited Neuropathies (GRIN) initiative.
Congratulations to GRIN Advisory Board member, Professor Joshua Burns
Congratulations to GRIN Advisory Board member, Professor Joshua Burns, for being recognized by the Australian Academy of Health and Medical Sciences for his outstanding contributions to medical and health sciences.
Pediatric CMT Natural History Study Enrollment Opening at Two Centers of Excellence
Pediatric CMT Natural History Study enhancement to their Charcot-Marie-Tooth (CMT) and Inherited Neuropathies (IN) patient registry, Global Registry for Inherited Neuropathies (GRIN).