There are more than 80 forms of Charcot-Marie-Tooth disease (CMT) and other inherited neuropathies (IN), each requiring its own approach to care and research. We are at a critical point in understanding these conditions.

Differentiating between the many forms of inherited neuropathies is essential to developing the targeted research, clinical trials, and treatments each type requires.

“I have CMT” is no longer a sufficient diagnosis.

“I have a mutation on my NEFL gene that causes CMT2E” is the level of detail that makes a difference for research and care.

Introducing GRIN

The Hereditary Neuropathy Foundation (HNF) and Hannah’s Hope Fund (HHF) partnered to create the Global Registry for Inherited Neuropathies (GRIN). The registry collects clinical and genetic information from patients diagnosed with the various forms of inherited neuropathies to help advance therapy development for these progressive disorders.

How registry data helps researchers

This data enables scientists to better understand the many types of IN and supports the registry’s goal of helping all patients obtain a precise genetic diagnosis. Collecting detailed clinical and genetic information can help scientists:

  • Study why individuals experience different symptoms from the same form of IN
  • Learn how future treatments may or may not work for a given patient population
  • Help medical professionals improve how they treat patients with IN
  • Speed up research by making key information available to scientists more quickly
  • Notify patients (or their families) when they may be eligible for clinical research studies or trials

Why the registry matters to industry

While inherited neuropathies are relatively common when considered as a group, each individual form is rare, and many are ultra-rare. Therapy development is costly, and industry investment in these disorders has only recently grown. The GRIN registry supports that engagement in three important ways:

  • Serving as a centralized resource for clinical and genetic information
  • Providing access to participants willing to contribute tissue samples
  • Connecting researchers with participants open to volunteering for clinical trials

Join the registry

Please consider joining GRIN today. Your information will be used to accelerate the research and clinical trials that could lead to future treatments for Charcot-Marie-Tooth, Giant Axonal Neuropathy (GAN), and other inherited neuropathies. Together we can make progress toward cures for these conditions. It takes approximately 30 minutes to complete your registration and make a difference for the future.