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New & Improved CMDIR Now Live!

Updated: Feb 18, 2021

The CMDIR has launched on a new and improved platform!

Your Data Has Power

Large amounts of data about affected individuals allow researchers to gain new insights into neuromuscular disorders, leading to better diagnoses and treatments. Together, people living with CMD have the power to make it happen — and it starts with you.

You can participate in research by completing surveys and submitting medical records pertaining to your or your child's diagnosis and treatment. You can also opt into sharing your data with researchers working to find treatments. As new opportunities arise to participate in clinical studies or trials, your registration in the CMDIR will ensure that you are contacted about these opportunities.

As more people log in and complete the new surveys in their dashboard, we will begin to share aggregated responses, so that you can see how you compare with others in your community.

If you have already registered in the CMDIR, your profile has been transferred to the new platform, but we need you to claim it so that you may retain access. You should have received an email with instructions on how to claim your profile. If the link in your email has expired, you can visit and click "Forgot password" at the top of the page to reconnect.

If you haven't yet registered in the CMDIR, now is the time! Help us make CMD a more accessible, intriguing space for innovative scientists and industry by taking part in this vital research project.

In the coming weeks, we'll be adding additional features to the platform:

  • Aggregate Analytics by CMD subtybpe (How do I compare?)

  • My Diary – a place for registrants to record notable events

  • Educational resources relevant to the surveys you complete

  • Affiliate interface for our registry partners to directly access data that registrants have authorized for sharing

  • Additional Languages (English & Spanish currently available)

Want to learn more?

Check out the getting started videos, hosted by CMDIR team member, Sarah Foye, and visit the registry at

Questions? Email us at See you on the CMDIR!


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