The registration process consists of two steps:
After creating your account, you must log in to complete the registration process.
Patients over the age of 18 who understand the consent form (and do not have a legal custodian) are eligible to join the Registry on their own. Otherwise, the legal guardian, parent, or custodian of the patient must sign the consent for the patient to join. When the patient becomes 18, if the patient is able to provide informed consent and the patient no longer wishes to participate in the Registry, the patient may choose to contact the Registry Coordinator and withdraw their consent. If the patient is between ages 10 to 17 and is able to understand the idea of participating in a registry, he or she must give assent (agree) to be included in DuchenneConnect. Please print this form and keep a copy for yourself. To print the first page of the consent and/or the Participation FAQ, please go back to those pages and select "Print" at the top right hand corner of those pages. Please indicate that you have reviewed and understand the "Understanding Your Participation" page and that you do not have any questions about your participation in the Registry. If you still have questions, before you check boxes and move on please contact the Registry Coordinators at firstname.lastname@example.org.
If you are registering a child between 10-17 years of age:
Please enter the code below in all lowercase letters to confirm your registration. Phones and tablets may default the first letter to uppercase, only lowercase letters are accepted.