Searching for a cure, Improving lives




The computer on which the Registry service runs is sited in a secure data centre. This data centre features resilient infrastructure, including multiple levels of 24/7 security, stable high-capacity power supplies, redundant storage, multiple peering arrangements, fire protection, environmental controls and on-site support.  The service is managed via secure internet connections, with physical as well as software security enabling access to only authorised personnel. It is password protected and has a firewall. The service is managed and supplied by Nvisage Ltd. and their authorised partners on behalf of Action Duchenne Ltd. The Registry is regularly backed up to prevent loss of data.




The Registry is controlled by Action Duchenne Ltd in compliance with the Data Protection Act (1998).


Confidentiality of Records


We will keep your data private and secure. Your data is protected under the Data Protection Act (1998). Unauthorised third party access will not be allowed. Results of research carried out using anonymised data from the Registry may be presented at meetings or in publications. Your health information will be accessed to help research and possibly to develop or plan new test procedures, treatments or products. Health information may be used to report results of research to sponsors and regulators. It may be audited by regulators to make sure that we are following regulations, policies and plans. In these circumstances the information will be accessed anonymously.


Ethical Approval 


Any research that uses the Registry must have been passed by a medical ethics authority (e.g. COREC in the UK) that is regulated by the EU Clinical Trials Directive 2001, or a non-medical ethical authority (e.g. a university ethical committee) that has been approved by our Steering Committee.




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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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