Sensitive personal data 

The Registry will hold the following categories of sensitive personal data about you (or your child):

  • Contact information (name, address, telephone and email)
  • Basic medical information (date of birth, gender, NHS number)
  • Biopsy result and tissue location
  • Genetic variation information (DNA mutation)
  • Medical interventions (e.g. during research projects)
  • Adverse symptoms (e.g. during research projects)
  • Clinical assessments (e.g. during research projects)
  • Clinical surveys (e.g. post-treatment).

Data owner 

Action Duchenne Ltd will be regarded as the Data Owner (under the Data Protection Act 1998). This means that Action Duchenne Ltd are responsible for access to the data in the Registry.

Data controller 

Action Duchenne Ltd will act as Data Controller (under the Data Protection Act 1998).  Action Duchenne Ltd has appointed a Registry Curator who is responsible for collecting, storing, handling and processing your data.  In order to administer the Registry, to maintain the data and to update the data they will have access to all the data in the Registry. They are also responsible for informing the Information Commissioner’s Office of the purposes for which your data is held. All employees of Action Duchenne Ltd have signed an express condition of confidentiality to keep your information confidential. Action Duchenne Ltd will only access the data for the purposes for which the Registry is kept.

Data transfers 

In the event that a research project outside the Registry needs your data it will only be transferred when the following conditions are met: The research cannot be done within the Registry database. For example computing the frequency of genetic variants can be done on the Registry database. Any data transferred is anonymous. The Steering Committee (consisting of senior medical professionals) has validated that the research will help achieve the goals of the Registry. In addition, under the Data Protection Act a transfer of data can only be made outside the European Economic Area (EU and Iceland, Liechtenstein and Norway), where there is “adequate protection” for the rights and freedoms of the individuals. Before any decision to transfer data outside the European Union is made Action Duchenne Ltd will take legal advice for the test of adequacy.

Participant right to access data

Under the Data Protection Act (1998) you have the right to access any data held about you on the Registry. To exercise this right you can contact the Registry Curator. The Registry also holds data specific to research projects. This research data may sometimes not be made accessible until after the specific research project has been completed if the nature of the research project requires this to be released at a future date.   Online access allows you to securely view and update your own data using a secure internet connection and password.  The purpose of this is to encourage your involvement, and reduce the burden on Action Duchenne to respond to data requests under the Data Protection Act (1998).

Access by health professionals

Health professionals such as clinicians and geneticists will be asked to release your (or your child’s) medical data using the Participant Medical Release Form. These health professionals will only be able to see the participant medical data of their own patients, excluding personal contact details. Other authorised health professionals may be granted permission by the Steering Committee to look at anonymised data on your (or your child’s) condition for a specific purpose which will benefit your (or your child’s) treatment and/or the treatment of other participants. If a health professional needs to contact you personally regarding a research project, the Registry Curator will pass on this request to you and your clinician. Your personal contact details will not be released to any health professional without your consent.

Access by researchers 

Because of the nature of the research it is not possible to declare all the researchers or organisations that, in the future, might have access to the data in the Registry. However, any access to the data in the Registry must firstly be authorised by the Steering Committee. Access to your data by researchers will be anonymous, as you will be identified using an anonymous reference code.  If a researcher needs to contact you personally regarding a research project, the Action Duchenne Registry Curator will pass on this request to you and your clinician. Your personal contact details will not be released to any researcher or any other third party without your consent.