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!
Pediatric CMT Natural History Study enhancement to their Charcot-Marie-Tooth (CMT) and Inherited Neuropathies (IN) patient registry, Global Registry for Inherited Neuropathies (GRIN).
The Hereditary Neuropathy Foundation (HNF), an advocacy and research 501c3 non-profit, today announces enhancements to their Charcot-Marie-Tooth (CMT) and Inherited Neuropathies (IN) patient registry, Global Registry for Inherited Neuropathies (GRIN). GRIN is an IRB...
Data regarding medical cannabis use for pain relief in CMT from HNF’s CMT Patient Registry, GRIN
The study highlights the significant impact of neuropathic pain on the quality of life and psychosocial well-being of individuals with CMT.
Over 200 individuals have participated in hopes of receiving a genetic confirmation of their CMT symptoms. Although many have found a definitive diagnosis, many others have received their results as a variant of uncertain significance (VUS)
HNF TRIAD Academic Partner Connecticut Children’s Publishes Results of CMT Pediatric Natural History Study to Better Understand Ankle Function and Gait HNF-funded research sought to determine how age and CMT type affect ankle strength in children. A detailed...
HNF & Kenneth Raymond Join Forces to Clarify CMT Genetic Reports Since the launch of HNF’s CMT Genie last August, over 200 participants have participated in hopes of receiving a genetic confirmation of their CMT symptoms. Although many have found a definitive...
Hereditary Neuropathy Foundation Re-Launches One-of-A-Kind Patient Registry for Charcot-Marie-Tooth Disease Research
Hereditary Neuropathy Foundation Re-Launches One-of-A-Kind Patient Registry for Charcot-Marie-Tooth Disease Research This user-friendly platform allows patients, caregivers, clinicians, and researchers the ability to manage health data to elevate CMT patient care. The...
Kenneth Raymond provides an overview of why sharing CMT symptoms in GRIN is so important!
Interested in driving CMT research forward? Watch our new 7-min GRIN Demo video explaining the steps in creating and updating your GRIN account!