DuchenneConnect Presents 2012 Data & 2013 Update

Parent Project Muscular Dystrophy and DuchenneConnect are happy to present the 2012 DuchenneConnect Year-End Report! Read about the registry’s accomplishments in 2012 and goals for 2013. We had a busy and exciting year as we continue to expand our services to patients and families, as well as to researchers and clinicians. A big “thank you” to everyone who registered on DuchenneConnect in March we had 92 new patient registrations, our highest month ever!

Learn about our collaboration with TREAT-NMD and GlaxoSmithKline for a study of Duchenne effects and burden. For the first time in Duchenne history, industry collaborated with multiple registries from different countries for a large scale research study. Another exciting “first” was Dr. Stan Nelson and team’s analysis of the DuchenneConnect data, exploring corticosteroid use, medication and supplement use, and walking. He reported his findings in a Direct Access Webinar last April, and the team will submit the outcome data for publication this year. Dr. Nelson and team truly appreciate our DuchenneConnect community data which wouldn’t be possible without your participation!

Other highlights include an improved Registry Profile Survey. We are collecting some new information from you, because industry and academic researchers asked for it to move research faster. We also started a pilot project to increase the number of underserved patients and families in the registry. We put DuchenneConnect tablets at several clinics across the country and trained a clinic representative to help patients register during their clinic visits. If this is effective, we plan to put DuchenneConnect tablets in more clinics.

All of this is in addition to our most important tasks: connecting patients to actively recruiting clinical trials and research studies, and educating patients and families through innovative resources. Please read 2012 DuchenneConnect Year-End Report and email us with comments, suggestions, or questions!

In 2012, 85% of Duchenne and Becker clinical trials recruited through DuchenneConnect. DuchenneConnect works because families like yours take the time to register and update. It is a valued community resource. If you haven’t registered yet, please register and join this community resource. If you have registered, please update your information.

Thank you for making DuchenneConnect such a valuable and effective resource for the Duchenne community!

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