For more information about the DMD Registry please contact:
The DMD Registry
Action Duchenne Ltd
41 West Street
London E11 4LJ
T: 020 8556 9955
Should you wish to make a complaint regarding the Registry please contact Action Duchenne Ltd at (firstname.lastname@example.org) or write to the address above.
Withdrawal or Completion
At some time in the future the Registry may cease to operate. It is anticipated that this will occur when it no longer is required to achieve the purposes for which it has been registered. For example if treatments have become widely available and long term studies have been completed. At that point in time you will be contacted to inform you that the Registry is closing and we will either seek consent for the data to be transferred to a clinical database or to be made irrevocably anonymous, or to inform you that the data will be deleted. If you decided to participate in the Registry your data will be held in the Registry until the Registry ceases to operate or you indicate that you wish to withdraw your data. You can always cancel your consent to participate by writing to the Registry Curator. If you revoke your participation you may be contacted and given the option of your personal data being kept anonymously, rather than deleting it. Cancelling your participation will not change your medical care or legal rights. By signing this consent form, you give us permission to use and/or share your data for the purposes stated above.