UK National Duchenne Muscular Dystrophy Registry

Parent Project UK and Trial Serve are finalising details for the new UK Registry for Duchenne Muscular Dystrophy.

So far we have done the following:

• Completed the database design
• Built the database and web data entry application
• Added Security and Filtering to NHS standards
• Completed the first draft for web site
• Completed the first draft of the legal forms
• Built the new hardware

Still to do in the next few weeks:

• Install the new hardware in a securing hosting centre.
• Finalise the design for genetic variants table
• Finalise the consent forms with the lawyers.
• Finalise the web site text and get feedback.

Once the system is working we will go and get approval from the UK ethical research committee. A great deal of research and effort has gone into ensuring that this proceeds satisfactorily.

We will be trialing the entry of parent and patients in late spring and expect to go live this summer. The site will be formally launched at the PPUK annual conference in October.