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.

Confidentiality 

The Registry is controlled by Action Duchenne Ltd in compliance with the Data Protection Act (1998) and GDPR (May 2018).

Confidentiality of Records

We will keep your data private and secure. Your data is protected under the Data Protection Act (1998) and GDPR (May 2018). 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. NRES [National Research Ethics Service]in England, working closely with authorities in Scotland, Wales and Northern Ireland that is regulated by the EU Clinical Trials Directive 2001/20/EC, or a non-medical ethical authority (e.g. a university ethical committee) that has been approved by our Steering Committee.