DMD Researchers
The DMD registry stores current and validated information relating to adults and young people affected by Duchenne and Becker Muscular Dystrophy. The database has been approved by the Data Protection Act (1998). Data can only be viewed and used for the purposes of furthering research into the search for a cure or treatments for Duchenne and Becker Muscular Dystrophy.
We welcome working with researchers and research consortia that would like to use a safe, powerful and web accessible database to store specific data relating to their own projects. Action Duchenne will help researchers and clinicians to establish data fields and tables that their projects require for their research. Data can easily be input and used through our easy to use web interface. User licence's can be agreed to protect this data for the exclusive use of researchers in that project. Projects can also gain access to the participants data in the DMD registry. Action Duchenne will make a small charge to researchers to cover administration and management costs.
Users must apply for a users licence that is a binding contract between Action Duchenne UK and the user to use the stored data only for the above aims of the registry. Misuse of data can lead to the withdrawal of your login permission and prosecution.
User licence's will only be granted for research projects that approval from Health Service Research Ethics Committee and approval by the DMD Registry Steering committee.
Researchers in the Registry
Geoff Bell
Anna Cunniff
Dr Penny Garrood
Institute of Human Genetics
University of Newcastle upon Tyne
International Centre for Life
Central Parkway
Newcastle upon Tyne
NE1 3BZ
0191 241 8649Dr Emma Matthews
Institute of Neurology
UCL
National Hospital for Neurology
Queen Square
London
WC1N 3BG
0207 837 3611 xt 4251Mac Spel
9190 E sugarberry pl
Tucson
AZ
85747
520 822 8686
