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We’re All In This Together: Building Trustworthiness with People, Clinicians and Health Systems

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PCORnet promises an incredible new era of clinical research—but we cannot begin to make progress until we have established trust. And trust, as we all know, is earned.

That is why I am thrilled to participate in the Building Trustworthiness in PCORnet public webinar on September 16, 2016 from 1:00 pm to 2:00 pm ET. This webinar is led by the people who seek answers to health issues. We will be bringing together patients, participants, caregivers, clinicians, industry, community and advocacy groups, researchers, and the public to start to ask, “How is PCORnet trustworthy in clinical research? What more can the network do? What does it have to learn?” and “How will PCORnet facilitate authentic engagement in research?
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PCORnet Colleagues Share Insights to Enhance Drug Review at FDA’s PDUFA Public Meeting

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Dr. Adrian Hernandez and Sharon Terry, co-principal investigators, PCORnet Coordinating Center, attended the U.S. Food and Drug Administration (FDA) Prescription Drug User Fee Act (PDUFA) Reauthorization Public Meeting on August 15, 2016. In alignment with the meeting’s goal to solicit public feedback on the agreement forged between FDA and stakeholders to evolve the PDUFA program to make the drug review process more efficient, Hernandez and Terry voiced their support of the agreement’s efforts toward patient inclusion, real-world evidence use, and rare disease drug development.
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PCORI Announces Progress Toward PCORnet’s White House Cancer Moonshot Commitments

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The Patient-Centered Outcomes Research Institute (PCORI) this week issued an update to the White House outlining progress made by its National Patient-Centered Clinical Research Network (PCORnet) toward its commitments to the Administration’s “Moonshot” initiative to accelerate cancer research.
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PCORnet Advocate Calls for Patients to Have a Louder Voice in Medical Research

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Neely Williams, patient co-investigator for PCORnet’s Mid-South Clinical Data Research Network, was featured in The Tennessean on Sunday, August 7, 2016 sharing her perspective on why patients need a louder voice in medical research.
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PCORI Guest Blog Explores PCORnet’s Multiple Sclerosis Research Network Built on Patient Input

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PCORnet’s Multiple Sclerosis Patient-Powered Research Network, iConquerMS, was recently featured in a PCORI Guest Blog titled “Multiple Sclerosis Research Network Builds on Patient Input,” authored jointly by the PPRN’s Co-PIs, Laura Kolaczkowski and Robert McBurney.
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PCORnet Features New Video and News from Partner Network, ImproveCareNow

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PCORnet invites you to learn more about our partner network, ImproveCareNow, by watching our latest video featuring Dr. Peter Margolis, Principle Investigator for ImproveCareNow. The Network is transforming care, health and costs for all children and youth with Crohn’s disease and ulcerative colitis (collectively known as Inflammatory Bowel Disease or IBD).
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Use of Electronic Health Records, Patient Reported Outcomes, and the Common Data Model to Transform Clinical Trials

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“PCORI is investing over $300 million into a clinical research network that will unite patients, clinicians, health systems, and EHRs,” says Dr. Adrian Hernandez, associate director of the Duke Clinical Research Institute. “The network itself has medical information and data on over 100 million subjects, and the patient EHRs are mapped to the PCORnet Common Data Model (CDM), which essentially organizes data into a standard structure.” ADAPTABLE will be the first pragmatic clinical trial to use the network. The trial will select patients via their EHRs, reach out to them electronically, consent them electronically, and then follow up with them electronically.
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PCORnet’s MoodNetwork to Lead $4 Million Research Study Comparing Stress Management Approaches

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Patient-Centered Outcomes Research Institute Funds Project as a Demonstration of PCORnet. A team of patient and stakeholder partners and investigators from 20 Patient-Powered Research Networks (PPRNs) that comprise PCORnet will take part in a $4 million research project, Healthy Mind Healthy You, to determine the optimal type and frequency of mindfulness-based treatment for managing stress.
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PCORnet leader shares real-world evidence insights at Bipartisan Policy Center panel

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The Duke Clinical Research Institute Director of Health Services and Outcomes Research and Co-Principal Investigator for the PCORnet Coordinating Center Adrian Hernandez, MD, MHS, was recently invited to participate in a Bipartisan Policy Center (BPC) roundtable focused on advancing the generation and use of real-world evidence.

The BPC, a nonprofit organization devoted to bipartisan solutions to questions of public policy, hosted the meeting at its headquarters in Washington, D.C. on June 23.
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PCORnet, PCORI’s Health Data Initiative, Commits to Advance White House Cancer Moonshot

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WASHINGTON, DC (June 29, 2016) – The Patient-Centered Outcomes Research Institute (PCORI) today announced its support of Vice President Joe Biden’s Cancer Moonshot program to accelerate progress in cancer research and care through a series of commitments by PCORnet, PCORI’s ambitious effort to harness health data and patient partnerships to accelerate the pace and power … Continue reading PCORnet, PCORI’s Health Data Initiative, Commits to Advance White House Cancer Moonshot