Registry FAQ
Is the DMD Registry safe?
The DMD Registry is managed by the national charity Action Duchenne UK Ltd (Action Duchenne). Action Duchenne has worked closely with UK clinicians, researchers and parents to establish the Registry. The DMD Registry is registered under the Data Protection Act (1998). Action Duchenne act as data Controllers under the Data protection Act. A copyright is applied to the data as a means of protecting it and does not imply any rights to resell the data. The Registry is stored on a database in a very secure hosting centre in the UK and is protected by firewalls. Access is gained by our password protected secure website.
What will the data be used for?
Data stored will be used to help to establish clinical experiments, trials and other research that will accelerate treatments for DMD and BMD. Participants or their parents might be asked directly by researchers, via their clinicians, to participate in future research projects. Action Duchenne will use the DMD Registry to keep DMD/BMD adults and parents informed of research and upcoming clinical trials by regular newsletters.
Who is authorised to register?
Any one who is registered with a National Health Service consultant clinician in the United Kingdom because they have been diagnosed as having either Duchenne or Becker Muscular Dystrophy, or their parents or guardian can register themselves onto the DMD Registry. Using the DMD Registry is entirely voluntarily and it will not effect your legal rights or right to treatment. You may withdraw from the DMD Registry at any time. The DMD Registry is free to participants.
Who can use the DMD Registry?
Researchers, clinicians and health professionals who wish to use the DMD Registry must apply for a licence. Researchers, clinicians and health professionals will need to show evidence of working to further the search for treatments to DMD and BMD to a Health Service Research Ethics Committee and the Registry Steering Committee to use the DMD Registry.
Please read the Registration Form for more facts about the DMD Registry, and your rights.
