For years our community has been making noise so that the scientific and medical communities would listen and focus on Duchenne. They're listening – now we need to talk! Filling out a survey or doing an interview about your family's experiences with Duchenne creates important data. This data is what clinicians, scientists, and government agencies need to develop new interventions, approve drugs, improve care, and ultimately help us end Duchenne.
Joanna Johnson has two sons with Duchenne. Take a moment to read why she believes the information these surveys gather is critical to the welfare of all children with Duchenne.
Parents, tell us what you think about clinical trials – whether your child has been in a clinical trial or not. We're working with industry to change the way clinical trials are designed and conducted in the Duchenne and Becker community, and we need YOUR input. What are some of your expectations and concerns regarding clinical trials? Please fill out one of these surveys so that we can share our community's thoughts about clinical trials – Real data can drive change!
People with Duchenne or Becker, parents, families: respond to PPMD's Share Your Story with the FDA. This story collection closes at the end of April, so please participate soon!
Register on DuchenneConnect or update your account, so you can learn about important surveys and get reports about the results, and learn about clinical trials. This Spring, DuchenneConnect will be conducting several important surveys to explore and improve the Registry experience.