(pictured: DuchenneConnect's Family Advisors at PPMD's 2015 Connect Conference)
DuchenneConnect, led by PPMD, has been approved for a three year, $1.4 million funding award by PCORI – the Patient Centered Outcomes Research Institute! This funding award allows DuchenneConnect to continue our work as a member of PCORnet, the National Patient-Centered Clinical Research Network. Our initial award for Phase I development of PCORnet began last year and will be ending this month, and our Phase II award will begin this fall.
Many of you have probably heard of PCORnet but may not remember what it is. PCORnet is basically a “network of networks”. Phase II will have a total of 34 health data networks that together make up PCORnet. That fact that DuchenneConnect was chosen to participate in PCORnet is huge for the Duchenne and Becker community! Our community is part of this national clinical research network and your involvement through DuchenneConnect will help advance research for Duchenne and Becker muscular dystrophy, as well as contributing to shared research that spans many disorders.
PCORnet will enable researchers to conduct clinical research more quickly and less expensively than is now possible, and will ensure that research focuses on the questions and outcomes that matter most to patients and those who care for them. The aim is to shift health research from researcher-driven to patient-centered research. We want ideas from YOU so we can make the most of this program for our community. We are excited to announce that as part of Phase II we will be able to continue to work with our Family Advisors that have been an incredible asset for directing the project in Phase I. We also thrilled to announce that Alan Chaulet will act as our Patient Engagement Liasion. You may know Alan from his work as a member of PPMD’s PAAC. As part of Phase II, Alan will help to engage the community in new ways and act as the liaison to the Family Advisory Committee.
DuchenneConnect will continue to collaborate with PatentCrossroads, Geisinger Health Systems, and the University of California, Los Angeles to achieve Phase II milestones. The new funding award will support our continuing efforts to develop mutually beneficial relationships with other networks within PCORnet to make the most of this opportunity. This program will allow us to make DuchenneConnect an even stronger community resource.
DuchenneConnect successfully achieved Phase I goals and our goals for Phase II include having:
There has never been a better time to be involved in DuchenneConnect!
If you are not already registered, we encourage you to register today at www.duchenneconnect.org. If you are already registered, please login to your account and update your/your child’s medical history.
Questions or concerns?
Please email us at firstname.lastname@example.org or call 201-937-1408.
The DuchenneConnect Team at Parent Project Muscular Dystrophy -
Holly Peay, PhD, CGC and John Porter, PhD – Co-PIs of DuchenneConnect PPRN
Ann Lucas, MS, CGC and Ann Martin, MS, CGC – Certified Genetic Counselors and DuchenneConnect Coordinators