Searching for a cure, Improving lives

Contact

Contact

For more information about the DMD Registry please contact:
The DMD Registry
Action Duchenne Ltd
Epicentre
41 West Street
London      E11 4LJ
T: 020 8556 9955
E: angela@actionduchenne.org

actionduchenne.enfield.nvisage.uk.com

Should you wish to make a complaint regarding the Registry please contact Action Duchenne Ltd at (info@actionduchenne.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.

 

 

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Action Duchenne launches new Research Strategy for Duchenne muscular dystrophy

November 17th, 2017

  Action Duchenne, a leading UK-wide patient and parent-led organisation for Duchenne Muscular Dystrophy, is

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Long-term microdystrophin pre-clinical work, moving towards a potential therapy restores muscle function in canines

July 26th, 2017

Promising microdystrophin pre-clinical work, moving towards a potential therapy has shown to restore muscle function

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FDA new approach would reduce number of patients treated with placebo

December 11th, 2017

The U.S. Food and Drug Administration (FDA) has published its recommendation for a new approach

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Results announced from survey ‘Juggling care and daily life’

December 11th, 2017

The 17th October 2017 was an important date for the rare disease community.  The highlights of the

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Duchenne – How do you measure a life?

Living with Duchenne – an animation

Taking charge of Duchenne

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