Are you getting confused by all the news and social media posts about clinical trials? Not sure which trials or studies may be appropriate for you or your child? You are not alone! Even healthcare providers are having a hard time staying informed about all the trials in the Duchenne space.
One of the many benefits of The Duchenne Registry is that we perform “targeted recruitment” through the Registry. This means that we search the Registry to see who appears to match the main inclusion criteria for a trial, and then we email only those registrants. We can search the Registry to find the matching age range, ambulation status, corticosteroid use, and even genetic mutation. This means that, if your Registry account is up-to-date, you will only receive emails about studies that may be relevant for you and your child. The majority of researchers (both industry and academic) request targeted recruitment through the Registry, so don’t miss out on this great service!
Simplify your life and join The Duchenne Registry today! If you are already registered, make sure your Medical Surveys are up-to-date so we can provide you with clinical trial news tailored to you or your child. The most important surveys to keep up-to-date are the Muscle Function and Corticosteroid surveys, and it is equally important that we have a copy of your or your child’s genetic test report. Genetic test reports can be uploaded directly into your Registry account, or you can email them to the address below.
The Duchenne Registry is going through many exciting changes right now (stay tuned!), but our mission remains the same – to help advance Duchenne research and connect our registrants to that research.
Questions? Please email the Registry Coordinators at firstname.lastname@example.org or call 888-520-8675.Join The Duchenne Registry