Register offline
Who Can Register?
Registration is only authorised to people who are registered with a Health Service consultant clinician because they have been diagnosed as having either Duchenne or Becker Muscular Dystrophy.
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Download or Request the Registration Form from Action Duchenne
The Registration Form can be downloaded as a PDF. If you have a printer you can print out two copies of the Registration Form. Alternatively you can contact Action Duchenne UK (telephone: 0208 556 9955) who can send you two copies are of the Registration Form by post.
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Complete a Registration Form and send it to your Consultant Clinician
Read the Registration Form carefully before completing it. One copy is for you to keep, the other copy is for you to send to your Consultant Clinician. Your Consultant Clinician will then complete the Medical Details section of your Registration Form and return it to you. Under the UK Data Protection Act (1998), Part II, Section 7, paragraph 10, clinicians have 40 days to complete the form and return it to you.
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Send the Registration Form back to Action Duchenne
Once you have received your Registration Form back from your Consultant Clinician you must mail it back to Action Duchenne. Action Duchenne will then enter your data the DMD Registry. If there are any problems with the Registration Form they will contact you.
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Action Duchenne will send You a copy of your Data
Once you have entered your data into the DMD Registry you will be sent a copy of your data, directly from the DMD Registry, so that you can check that we have entered it correctly. If you think we have made a mistake you can contact us to rectify it.
