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!
Learn more on this topic
Latest News and Related Blog Posts
CMT Highlight Reel: How does CMT data drive research using GRIN?
Kenneth Raymond provides an overview of why sharing CMT symptoms in GRIN is so important!
Interested in driving CMT research forward? We need you!
Interested in driving CMT research forward? Watch our new 7-min GRIN Demo video explaining the steps in creating and updating your GRIN account!
HNF is Reshaping Drug Repurposing for CMT
HNF has partnered with Rarebase, a public benefit precision medicine company that has screened a large library of FDA approved small molecules to identify candidates for various types of CMT. Their tech-enabled drug discovery platform is called Function™. There are many published discoveries on the genetic cause of many types of CMT, including an understanding of the basic mechanism of disease and potential targets for FDA-approved drug repurposing. It is this understanding that allows HNF and Rarebase to target the genetic root cause of CMT.
Webinar: Making Sense & Science of CMT Symptoms
How do we know if our symptoms are Charcot-Marie-Tooth Disease related, and how can we drive research to better answer this question?
Hot off the Press: CMT Update
As we start the new year energized and ready to continue our mission of bringing treatments and cures for CMT, we have rebranded our CMT Update newsletter to feature our lead research programs including the GRIN patient registry, the HNF-funded research milestones...
Using Medical Cannabis for Managing Pain in Charcot-Marie-Tooth Disease
Using Medical Cannabis for Managing Pain in Charcot-Marie-Tooth Disease - Patient Reported Outcomes Data regarding medical cannabis use for pain relief in CMT from HNF’s CMT Patient Registry, GRIN, was analyzed and published by a team lead by Brian J. Piper, PhD and ...
Hereditary Neuropathy Foundation Launches New Website and Webinar to Support Charcot-Marie-Tooth Disease Research
HNF’s website provides CMT community, academia, and biotech industry a hub for exploring research, clinical trials, vital resources, and ways to get involved.
The Key Role CMT Patients Play in Research
Without your participation, researchers won’t have the essential patient information to develop drugs, gene therapies, and clinical trials for Charcot-Marie-Tooth and other Inherited Neuropathies. In addition, as GRIN grows, we gain greater insights from you as patients to help accelerate therapies for Charcot-Marie-Tooth (CMT) and Inherited Neuropathies.
A study of the correlation between gait abnormalities, activity monitoring parameters, CMTPedS and a biomarker in children with Charcot-Marie-Tooth disease.
A study of the correlation between gait abnormalities, activity monitoring parameters, CMTPedS and a biomarker in children with Charcot-Marie-Tooth disease.
Natural History Study Assessment of CMT patients to Support Virtual Clinical Studies
The goal of the project is to evaluate years of collected patient-reported data and to correlate the findings to specific cohorts to include genotype, phenotype and clinical features.