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).

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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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