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Our registry is powered by Trial Serve a clincal trial and registry management service. View a range example screenshots from result screens, report screens and data visualisation maps.

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Governance

Action Duchenne has resolved to establish a number of committees consisting of directors and senior appointees to manage the governance of the Registry.

The Board of Action Duchenne has approved the following Committees and Managers:

The diagram below illustrates the Registry Governance structure, the Committees and their key relationships.

Diagram of Registry Governance structure

Please contact Action Duchenne if you wish to know the more about the DMD Registry Governance policies.


Action Duchenne

The DMD Registry is sponsored and controlled by Action Duchenne UK Limited (Action Duchenne Ltd), and has been registered under the Data Protection Act (1998).

Treat NMD

The DMD Registry is part of the Treat-NMD Network.

The DMD Registry - Helping to win the race against time