Congenital Muscle Disease International Registry (CMDIR)
The CMDIR was created in 2009 to identify the global congenital muscle disease population for the purpose of raising awareness, standards of care, assisting with enrollment in clinical trials, and assisting the research and clinical community to find treatments and improve care. To date, we have registered over 3,000 affected individuals from 86 countries around the world.
Your Information Matters
Simply put, we will not be successful in finding treatments unless we know who the affected individuals are, what the diagnosis is and how the disease affects the individual. All CMD and LGMD subtypes are ultra-rare conditions - every person counts. Our goal is to help propel knowledge and awareness of congenital muscle disease toward treatments.
You do not have to be diagnosed with a specific muscle disorder to register. We welcome undiagnosed affected individuals with congenital through later onset muscle weakness, and can provide information on institutions that perform genetic testing, medical providers who specialize in the diagnosis and treatment of muscle disease, and community support groups to put you in touch with other affected individuals and families.
Registration is easy, and you can choose what information you want to share.
Advancing Research
The information you share will be pooled with other registrants in the CMDIR and shared with researchers as de-identified, aggregate data. Periodically, we may send you an email to return to your CMDIR profile to answer additional questions that will help researchers and clinicians better understand your disorder. If and when clinical studies and trials become available in which you may be eligible for, we will be in touch with more information about how you can participate.
In addition to providing de-identified, aggregate data to researchers, we also provide that aggregate data back to you. Interested to see how you/your child compares to others in your community? We make it easy to view data collected by others in the surveys you complete.
Your Privacy Matters
We take your privacy very seriously and will not share your identifying information without your consent. We are compliant with HIPAA and GDPR laws and maintain confidentiality the same way your doctors do. Please review our Privacy Policy and Informed Consent Statement to Participate in the CMDIR to learn more.