What next?
The Data Protection Act (1998) requires that we inform you of all the reasons why you and Action Duchenne can communicate about DMD Registry. These reasons are fully explained in the Registration Document that you downloaded when you register, but there is a summary of the reasons below:
You can Contact Action Duchenne
- To ask them any questions about the DMD Registry
- To make a request to see the data held about you
- To change the data held about you if you believe it is wrong
- To ask about Clinical Trial that you are interested in
- To re-consent once a particpant is aged over 18
- To withdraw from the DMD Registry at any time
Action Duchenne may contact YOU
- After you have registered there may be a question about your data
- A periodic newsletter about the DMD Registry to keep you informed
- Periodically to check that your contact details are correct
- To seek your consent if your data is processed in a new way
Your Clinician may contact YOU (about the DMD Registry)
- If you have been identified for a Clinical Trial
- If you have been identified for a Treatment
