DMD Pathfinders and Duchenne UK are carrying out this survey into attitudes towards DMD research among adults with the condition. This will help demonstrate to charities, pharmaceutical companies and regulators whether there is a need for adult trials, and will help us to understand what adults would like research to focus on as well as important things to consider when running adult trials.
If you are interested in research, completing the survey is a must! It could provide vital evidence to support our campaign to make new treatments available to adults. If we do nothing, there is a danger that new treatments will not be available to adults once they have been developed.
Even if you have no interest in DMD research or don’t think it can help you as an adult, we still want to hear from you! It could be that many other adults feel the same. This is incredibly important information for us and will help us decide what our priorities should be as a charity, and how much time we should dedicate to research issues.
This survey can be completed by young people and adults themselves or by parents, relatives and caregivers on their behalf. The survey should take 10-20 minutes to complete.
Please help us to get responses from as many adults, parents and carers as possible! https://goo.gl/forms/xIsqC12ykgSPGW5z2