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DuchenneConnect Receives $970,000 Award

DuchenneConnect was recently awarded close to $1 million dollars in funding from PCORI, the Patient-Centered Outcomes Research Institute! 

PCORI

DuchenneConnect will be one of 29 members of PCORnet, the National Patient-Centered Clinical Research Network.  The goal of PCORnet is to create a large, highly representative, national network for conducting clinical research.  This is especially exciting because we hope to ask and answer important questions about Duchenne and Becker muscular dystrophies using the huge, connected network.   

Our goals for DuchenneConnect during this project include:

 

  • Learn more about what you want from DuchenneConnect
  • Understand your research priorities—what do we need to better understand about Duchenne and Becker?
  • Add new technologies to the Registry to make it easier for you to register and update your information
  • Improve the Profile questions and the way your data is coded so it is more useful to researchers
  • Test if and how we can bring in electronic health record (EHR) data
  • Improve our ability to reach underserved patients and families
  • Increase our total number of registrants

 

A fundamental part of PCORnet is involving patients and families in decisions about the governance and use of the data.  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. 

 

There has never been a better time to be involved in DuchenneConnect!  If you are not already registered, we encourage you to register today.  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 coordinator@duchenneconnect.org or call 201-937-1408.

 

Read the press release about this exciting award and make sure you are registered with DuchenneConnect!

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