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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

Researchers Discuss How One Aspirin Study Can Transform the World of Clinical Trials

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Researchers discussed how one of the largest pragmatic clinical trials in history has the potential to transform clinical research at this year’s annual meeting of the Drug Information Association (DIA) in Philadelphia. Adrian F. Hernandez, MD, MHS, Director of Health Services and Outcomes Research, and Lesley Curtis, PhD, Director of the Center for Pragmatic Health Systems Research, spoke during separate sessions about their progress with the ADAPTABLE (Aspirin Dosing: A Patient-centric Trial Assessing Benefits and Long-Term Effectiveness) study.
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PCORI Guest Blog Explores the Role of Caregivers in Alzheimer’s Research

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As new treatments become available, researchers should include the caregiver’s perspective in tests of those therapies because it is often the caregiver who administers the treatment and ensures compliance with medications. A new PCORI guest blog features the National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network also known as the Alzheimer’s Patient Powered Research … Continue reading PCORI Guest Blog Explores the Role of Caregivers in Alzheimer’s Research

PCORI Guest Blog Explores How Alzheimer’s Network Puts Caregivers at Center

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Around 15 million Americans provide unpaid care for people with Alzheimer’s and other dementias. Along with patients, these caregivers are at the center of PCORnet’s Patient-Powered Research Network (PPRN) known as the Alzheimer’s PPRN. In a PCORI guest blog, two investigators—a caregiver and the network project director—describe their experiences with Alzheimer’s and reasons they think … Continue reading PCORI Guest Blog Explores How Alzheimer’s Network Puts Caregivers at Center

PCORnet Spotlights its Expertise at 2016 Health Datapalooza

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PCORnet had a fantastic experience at this year’s Datapalooza, as it was an opportunity for us to showcase how we are harnessing the power of data and unique partnerships to conduct important health research faster, more efficiently, and at lower cost than was previously possible.

PCORnet collaborators Adrian Hernandez, MD, MHS, FAHA, Keith Marsolo, PhD, and Russ Waitman, PhD, spoke at Health Datapalooza. Hernandez gave an overview of PCORnet. Marsolo presented PCORnet’s model for sharing data. Waitman contributed to a session describing how variability in clinical information across electronic data sources hinders the exchange, collection, and analysis of health data.
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Patient Involvement in Research: Innovative, Patient-Powered, Welcoming

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I’m a patient helping to change the culture of research and I am excited! It feels great to be empowered, encouraged, and a part of something larger than myself. I get to be a part of things I could only imagine someone else doing and do things I never really thought I could achieve. How did all this happen?
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