Updated: May 3
After 11 Years, the Congenital Muscle Disease International Registry (CMDIR) is Getting an Upgrade
If you’re part of the CMD community, you’re probably quite familiar with the Congenital Muscle Disease International Registry, or CMDIR. (And if you’re not familiar with the registry, let us know ASAP. We have some very important information to share with you!) We have some exciting news that will enhance the way your, or your child’s, data is tracked and reported on, starting this spring.
In 2009, Cure CMD partnered with a handful of other organizations to launch the CMDIR. Our aim was to:
Identify all people around the world with CMD;
Assist with individual genetic confirmation;
Raise awareness about congenital muscle conditions;
Update standards of care;
Serve as a central hub of information; and
Support natural history studies, clinical trial recruitment and research publication.
In the first month of its launch, the CMDIR had data from fewer than 50 people. At the time, we couldn’t imagine that 11 years later, we’d have nearly 3,000 registrants spanning 40+ neuromuscular conditions, and would get monthly inquiries from researchers and companies looking to delve into congenital muscle disorders.
We’re fortunate that the CMDIR continues to gain new registrants and retain long-time ones, and we’re excited to share that we have outgrown our original infrastructure. Our tiny staff can no longer reasonably manage data from thousands of people on the old platform, so it was time for something new.
Enter Ordinal Data. With a new, ultra-flexible data hosting organization, the CMDIR is more user-friendly than ever with:
A mobile-friendly interface
Integrated educational materials relevant to a user’s profile
Easy opt-in for data-sharing with relevant researchers
Easy patient consent
Customizable surveys for each subtype
Full-site, multi-language support. The new CMDIR will launch in English and Spanish, and will add additional languages over the next two years
Flexible, comprehensive, de-identified, aggregate data reporting for all diagnoses, useful to researchers and industry working to advance the clinical trial pipeline. Overall, the new CMDIR is a more accessible, streamlined platform for better collection, securing, and sharing of data for current and future research important to the design of treatments for CMD.
CMDIR staff are already planning to leverage the power of our revamped database: We’ll be launching three retrospective natural history studies to grow the research community’s understanding of these rare disorders.
Look for the shiny new registry in the next few weeks, and make sure your contact information is up to date in your current registry profile before May 15, 2020 so that we know how to reach you! Those currently registered in the CMDIR will receive an email at the address currently on file, with instructions on how to log into your new registry profile.
Cure CMD and the CMDIR staff are committed to working with you and for you to provide relevant, necessary, easy-to-use resources that are integral to the work of our community’s researchers and clinicians.
If you have any questions about the CMDIR or want to learn more, please reach out at firstname.lastname@example.org.