CMT Kenneth Raymond

CMT Highlight Reel: How does CMT data drive research using GRIN?

by | Mar 15, 2023 | 1 comment

Kenneth Raymond provides an overview of why sharing CMT symptoms in GRIN is so important!

The Global Registry for Inherited Neuropathies was created by HNF to address the issue of the lack of quantitative and structured data collected on CMT disease. The registry collects private, de-identified data that is valuable for research, particularly for biotech and pharma. The registry helps researchers to gauge the effectiveness of CMT drugs by providing a large window of symptom data. The prevalence rates are important for CMT researchers to have a sufficient patient population for trials. Ultimately, the registry helps to advance our understanding of CMT and will help advance drug developments.

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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.

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1 Comment

  1. Barbara Collins-Newing

    I would love to help research into CMT but live in Southern England and have problems with walking and driving any great distance. Is there anything I can do to help?


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