In an effort to learn more about the patient and family experience around clinical trials that have stopped or were terminated, PPMD and Duchenne UK have collaborated on a survey to learn more about your experiences.

Clinical trial terminations can be a devastating experience for any family participating in a trial. The Duchenne community has experienced a number of these terminations in the last decade.

While the community understands clinical trials are experiments and not therapies, the experience of learning about the outcome of a trial varies and can be very difficult for any family involved.

It is important to learn about your experiences in the hope that the process may be improved for future trials. PPMD and Duchenne UK will be making recommendations to companies and study sites based on what we learn.

Please note if you have participated in more than one trial that was terminated, you can take the survey a second time after you complete the first survey.

Complete the Survey