Why register?
The DMD Registry has the following purposes:
Identify Participants for Clinical Trials
Because the DMD Registry holds genetic information it allows clinicians and researchers, who have been authorised by medical research ethical committees, to search for participants with specific features for clinical trials. Without the DMD Registry finding participants with specific features would be time consuming and costly because their information is held in paper files across the country.
Publicise and Recruit for Clinical Trials
The DMD Registry can be used to keep track of, and publicise clinical trials in the UK and other countries. Sometimes a clinical trial may use the website to recruit for a trial. If a participant is already registered this will save the clinician and researcher time.
Run Clinical Trials More Easily
A clinical trial can use the DMD Registry as a database for their own clinical trial data. Because the DMD Registry already holds participants data and runs securely over the internet then clinicians and researchers can reduce their costs and run trials nationally more easily.
Help Plan New Treatments
Joining the DMD Registry will improve the ability of clinicians and researchers to plan for treatments. Knowing how many participants are suitable for which treatments will allow clinicians to plan and budget for treatments in the future.
Keeping You Informed
The DMD Registry will keep participants regularly informed about new clinical trials and treatments. As clinicians and researchers improve their understanding DMD then more clinical trials and treatments are expected.
