Welcome to Global Registry for Inherited Neuropathies (GRIN)
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Empower CMT research – it starts with your story!
**Why Should You Join GRIN?
The answer is simple – we need YOU!
By participating in GRIN, you play an essential role in driving breakthrough therapies for Charcot-Marie-Tooth (CMT). Without your input, researchers won’t have the critical patient data needed to develop new drugs, gene therapies, and clinical trials. You hold the key to unlocking new possibilities in patient-focused research.
As GRIN grows, so do our insights. The more you share, the faster we can accelerate progress. Sharing your experience with CMThelps scientists understand why people experience different symptoms and allows them to focus on what matters most to patients. Your unique information could reveal patterns between specific mutations and symptoms, leading to tailored treatments for different types of CMT.
By completing your profile, your anonymous survey response will drive research and help advance Charcot-Marie-Tooth research and design future clinical trials. You’ll be first to know when you’re eligible for trials and contribute to studies that enhance therapy development alongside our industry partners. Your information will guide healthcare providers, improving diagnosis and care for patients like you.
Anyone diagnosed with CMT can join GRIN. Your information is kept secure and confidential, and only approved researchers and partners will have access to your de-identified data.
Together, we can change the future of CMT. Let’s take the next step—join GRIN today!
Choose your path to GRIN
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!
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Latest News and Related Blog Posts
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).
First Ever Biorepository For Charcot-Marie-Tooth, HNF Launches The CMT Biobank
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...
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
9 Key Findings from Your GRIN Surveys (and why you need to come back and complete more)
The study highlights the significant impact of neuropathic pain on the quality of life and psychosocial well-being of individuals with CMT.
CMT Research Update: Pediatric Ankle And Gait Function
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...
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...
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.