GRIN

3 Reasons to Join the Global Registry for Inherited Neuropathies – GRIN!

by | Jan 18, 2021 | 0 comments

Started in 2013 in partnership with Hannah’s Hope Fund, the Global Registry for Inherited Neuropathies – GRIN – has been collecting invaluable, self-reported natural history data directly from CMT patients and/or their caregivers.

This data has helped HNF and its partners in industry, academia and government identify previously unknown genotype/phenotype correlations, uncover important comorbidities such as pain or respiratory issues, and allowed us to target our research spending based on actual patient need. By participating in GRIN, you are joining a community of patients dedicated to helping us find treatments and cures for CMT and other inherited neuropathies.

3 reasons to join GRIN:

  1. Joining GRIN can help you get fast-tracked into important clinical trials and studies, including HNFs pilot study collecting important visual data to enhance diagnosis and treatment, as well as support clinical trial design.

2. You are empowering our global network of researchers with important self-reported data that can be used to identify potential new avenues for therapeutic development.

3. Your participation benefits the CMT community as a whole – we all win together!

Help us in our fight to find a cure for CMT and other inherited neuropathies – join GRIN today!

Learn more on this topic

Related Blog Posts

Global Registry For Inherited Neuropathies: Your Questions Answered

Global Registry For Inherited Neuropathies: Your Questions Answered

Why are we asking you to join our registry? It’s simple. Without you, researchers won’t have the essential patient information to develop the drugs, gene therapy, and clinical trials for Charcot-Marie-Tooth and other inherited neuropathies.
This is why the Hereditary Neuropathy Foundation (HNF) created the Global Registry for Inherited Neuropathies (GRIN). The registry collects the historical, clinical, and genetic information on patients diagnosed with the various forms of inherited neuropathies to help advance therapy development for these debilitating disorders. We understand there may be some hesitation joining our registry. To help mitigate any concerns, we’ve have the answers to your most common questions.

A New Mouse Model for Charcot-Marie-Tooth (CMT2)

We were recently informed that The Jackson Laboratory (JAX, a nonprofit biomedical research institution headquartered in Bar Harbor, Maine) had taken delivery and will be distributing a newly generated CMT-related mouse model. The new model expresses mutant mitofusin 2, a mitochondrial membrane protein involved in mitochondrial fusion and regulation of vascular smooth muscle cell proliferation.

Hot Off the Press – Potential Treatment for CMT1A

Two recent publications from Pharnext describe a novel synergistic combination of 3 drugs (baclofen, naltrexone and sorbitol) and its effect on CMT1A both in the lab and in a phase II clinical trial. These 3 drugs already approved but for unrelated conditions, are combined at new optimal lower doses and under a new formulation. This novel potential therapeutic is called PXT-3003.

Join the conversation

Leave a Comment

0 Comments

Submit a Comment

Your email address will not be published. Required fields are marked *

Newsletter

Join for notifications on events, campaigns, & news