Study at CHOP. We need your help participating.

Dear Adolescents and Parents,

In keeping with our goal to inform families about current research endeavors, we would like to share information with you about a research study in which some community members have participated. We know that many of you are interested in research, so we invite you to take advantage of an opportunity to provide your opinions to researchers.

Skip Nelson, Bill Reynolds, and Diana Harris, researchers at The Children’s Hospital of Philadelphia (CHOP), would like to talk with adolescents about different approaches to clinical trials that may one day be available to the DMD community. They have already talked in person and online to a number of parents, many of whom have suggested that they would involve their older adolescent sons in decision making about clinical trial participation. Therefore, they would like to ask the opinions of adolescents about these same topics. For example, they are interested in how adolescents with DMD think about issues such as the risks and benefits of participating in research studies and what factors would influence their participation decision. In the near term, they would like to invite six to eight adolescents to participate in an online dialogue that would take place over the course of several days. This approach gives participants the chance to think about the questions asked and to discuss the subject matter with parents, if they so choose. Over the next several months there will also be opportunities for adolescents with DMD and parents of children of any age to participate in 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 with adolescents who might be interested in participating in this project. If you think this study sounds interesting or you would like to learn more, simply call Diana at (267-426-0066) or click this email link (harrisdi@email.chop.edu) and send her a brief message letting her know you are interested and want to hear more. The researchers encourage parents of adolescents who might like to participate to call with questions.

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Hi All,

Ryan was kind enough to post this invitation on the site for us. Diana Harris and I are members here on the community site, and either of us would be happy to answer any questions you have. You can contact us here on the site or via the email address at CHOP that is listed in the invitation that is posted here. We look forward to discussing our study with you.

Bill Reynolds
I participated in one of the online discussion groups - it's time well spent and raised my awareness in general about clinical trials.
Thanks for the plug, Keith. We've been thinking about your feedback from the past group and considering some kind of hybrid where we allow people to contribute to the discussion at their convenience, as was the case with your group, but also incorporate some type of real time conference call or other mechanism for generating greater interaction among the participants.

Bill

Keith said:
I participated in one of the online discussion groups - it's time well spent and raised my awareness in general about clinical trials.
I think that would be a good add....

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