In keeping with our goal to inform families about current research endeavors, we would like to share information with you about a research study being conducted over the next year. We know that many of you are interested in research, so we invite you to take advantage of an opportunity for parents and adolescents to be involved.
Skip Nelson, Bill Reynolds, and Diana Harris, researchers at The Children’s Hospital of Philadelphia (CHOP), would like to talk with parents and adolescents about different approaches to clinical trials that may one day be available to the DMD community. They are interested in how you and your son with DMD think about issues such as the risks and benefits of participating in research studies and what factors you believe would influence your participation decision. Over the next several months there will be opportunities for adolescents with DMD and parents of children of any age to participate in both focus groups and individual interviews, either face-to-face, by phone, or via email/online chat. A major goal of this project is to develop information about research participation decision-making that will be valuable to researchers who will design future clinical trials focused on DMD for children and young adults of any age.
At this stage of the project, the research team is collecting contact information from families who might be interested in participating in this project. That’s where you come in. If you think this study sounds interesting or you would like to learn more, simply call Diana at (267-426-0066) or send an email to firstname.lastname@example.org with a brief message letting her know you are interested and want to hear more.
You can also address questions to Bill Reynolds right here on PPMD Community!