Interested in driving CMT research forward? We need you!

by | Mar 8, 2023 | 3 comments

Interested in driving CMT research forward? Watch our new 7-min GRIN Demo video explaining the steps in creating and updating your GRIN account!

Key Points:

  • The account creation process is best done on a computer using Chrome, Edge, or Safari browsers.
  • The first step is to go to the HNF website and choose “New to GRIN” on the GRIN registry page to access the request access form.
  • After completing the request access form, you’ll receive an email from HNF to verify your account.
  • The natural history study involves answering 60 CMT-related questions about how the disease affects you.
  • There are also NIH-funded ClinGen surveys that researchers can use to better understand other signs and symptoms related to CMT.
  • The Sharing Center allows you to create a link to share your surveys.
  • The Documents section is where you can upload your genetic test results.
  • The dashboard shows all your surveys, new and in-progress studies, and completed surveys, along with the time to complete them, the number of questions, and the start button.
  • The General Information section lets you view and edit your basic contact information.
  • The Journal is for your personal use, and the Messages section is where you’ll receive messages from inside the GRIN platform (the sender will be HNF).

Learn more on this topic

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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. Dianna Tyler

    I suffer with intense neuropathy pain especially at night.

  2. Dianna Tyler

    I would like to join. I have CMT AND
    Hereditary neuropathy.


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