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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The Key Role CMT Patients Play in Research

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.

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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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