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National Patient-Centered Clinical Research Network Coordinating Center

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Genetic Alliance sits at the nexus of the most current and influential research and consortium efforts, most notably through involvement in the National Patient-Centered Outcomes Research Network (PCORnet). Since 2015, Genetic Alliance has served as a key part of the PCORnet Coordinating Center and led efforts to:

  • Coordinate, convene, and empower the Patient-Powered Research Networks (PPRNs) of PCORnet;
  • Manage the Commons, a platform designed to enable participants to share resources, engage in dialogue, and learn from one another;
  • Elevate the voice of participants to challenge the status quo around what it means for research outcomes to suit community needs;
  • Implement and assess people-centered activities; and,
  • Establish methods to make it easier for people in the healthcare system to access and share their data.

 

Key Accomplishments

  • Convened hundreds of collaborative meetings, workshops, webinars, and conference calls
  • Conducted an engagement assessment project analyzing engagement strategies and activities from all 35 PCORnet networks to identify best practices, challenges, and lessons learned
  • Shared public-facing, consumer-appropriate lay materials to improve the capacity of real people understanding and contributing to the participant-driven research ecosystem
  • Developed a suite of tools to enable communities to better plan, implement, and measure engagement activities
  • Supported all 20 PPRNs through the process of joining and executing SMART IRB, a single IRB platform, for a multi-site research study
  • Led data pilots among PPRNs to support EHR, mHealth, and PopMedNet integration with participant registries to advance participant-driven research efforts
  • Partnered with the PPRNs and other participant-driven research organizations to grow collective people-centered research power and further understand the role and value of the advocacy community in the larger research ecosystem
  • In 2016, convened a vibrant and dynamic Building Trustworthiness in PCORnet two-day meeting with support from PCORI

 

 

 

 

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4301 Connecticut Ave NW, Suite 404, Washington DC 20008-2369 | Tel: 202.966.5557 | Fax: 202.966.8553 | EIN 52-1571905

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