Thank you for taking the time to complete your profile and assisting the effort in finding a treatment and cure for these diseases.
Please note, if there is more than one affected individual in your family, you may use the same login and password to create multiple profiles. However, a separate survey must be completed for each family member. This can be done after registering by clicking "Add a Family Member" from your profile page.
Please click here to read the Consent to Participate in the CMDIR prior to registration.
If you have any questions, please contact us at:
I am registering myself as the affected individual and I am at least 18 years of age. I am the parent or legal guardian of a minor affected child, and I am at least 18 years of age. The adult individual for whom I am completing the registry is unable to physically access the registry. I have discussed participation with this affected individual and they provide consent. The individual for whom I am completing the registry is deceased.
I have read and understand the consent and agree to participate in the registry.
Assent: I am a person with congenital muscle disease between the ages of 8 and 17 years. The purpose of the CMDIR and how my data will be stored has been explained to me. My parents and I have discussed any further questions I may have with the CMDIR Counselor. Participation in the CMDIR has been explained to me and I agree to participate. I will be contacted when I turn 18 years of age and will be asked to consent as an adult.
Please indicate your assent to participate as the affected individual between ages 8-17
Please enter the code below to complete your registration:
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