Invitation for attendees of Connect Conference 2009

Dear Parents,

You may have seen past notices from us on the Community Site inviting you to speak to us for a research study. We (Skip Nelson, Bill Reynolds, and Diana Harris) are researchers at The Children’s Hospital of Philadelphia (CHOP), and we will be attending the upcoming PPMD conference in Atlanta to conduct interviews with interested parents of children with DMD (any age). We would also like to talk to adolescents (aged 13-17) with DMD. Our study is about community members’ opinions of different approaches to clinical trials that may one day be available to boys with DMD. 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. We 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, we would like to ask adolescents about issues such as the risks and benefits of participating in research studies and what factors would influence their participation decision.

Over the next several months after the conference 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 discussion.

If you are interested in speaking with us or would like to learn more, simply call Diana at (267-426-0066) or contact her via email (harrisdi@email.chop.edu) with a brief message letting her know you are interested and want to hear more. Diana Harris and Bill Reynolds can also be found here on the Community Site. We encourage parents of adolescents who might like to participate to get in touch with questions.

Sincerely,

Diana, Bill, and Skip

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