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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

Drawing on Mental Health “Experts-by-Experience”

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Two leaders, Drs. Andrew Nierenberg and Roberta Tovey, of PCORnet’s Patient-Powered Research Network (PPRN), MoodNetwork, share their thoughts and excitement in a PCORI Guest Blog about the purpose, history, and impact of MoodNetwork, which is committed to changing how mood disorders are understood and treated in our society.
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PCORnet Leaders Participate in Policy Roundtable to Advance the Use of Real-World Evidence

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On May 25th 2016, PCORnet leaders Adrian Hernandez and Russell Rothman were invited to participate in a Bipartisan Policy Center roundtable focused on advancing the generation and use of real-world evidence. The roundtable welcomed thought leaders from across industry and academia, including Amgen, Pfizer, Robert Wood Johnson Medical Group, and Duke, Columbia, and Yale Universities. Information generated from the roundtable and other activities, including interviews will multiple other members of PCORnet, will inform a final set of policy recommendations to be released by the Bipartisan Policy Center in late June.
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Placing Arthritis Research in Patients’ Hands

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To mark this Arthritis Awareness Month, Ben Nowell and Kelly Clayton share their thoughts with PCORI about the Arthritis Partnership with Comparative Effectiveness Researchers (nicknamed ArthritisPower, or AR-PoWER). The ArthritisPower partnership is one of the Patient-Powered Research Networks that make up PCORnet. Read this PCORI Guest Blog to learn more about a patient-led, patient-centered research registry … Continue reading Placing Arthritis Research in Patients’ Hands

PCORnet Announces Enrollment of First Participant in ADAPTABLE Aspirin Study

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“PCORnet is shifting the research paradigm through studies like ADAPTABLE by introducing a new genre of patient-centered research where patients are engaged to improve the science of clinical trial design,” said Adrian F. Hernandez, MD, MHS, director of outcomes and health services research at the Duke Clinical Research Institute (DCRI) and PCORnet’s Coordinating Center Co-Principal Investigator.
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How Parents, Patients, and Researchers Help Define the Future of Autism Research

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In 2015, the Interactive Autism Network (IAN) became one of the Patient Powered Research Networks (PPRNs) that make up PCORnet. Established by the Kennedy Krieger Institute in 2006 to foster communication and trust between the autism community and researchers, (IAN) aims to improve understanding of the causes of, and discover treatments for, this complicated disorder.
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PCORI Board Approves $12.5 Million for PCORnet Patient-Powered 
Research Network Demonstration Projects

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WASHINGTON, DC (Mar. 22, 2016) — The Patient-Centered Outcomes Research Institute (PCORI) Board of Governors today approved $12.5 million for five Patient-Powered Research Network (PPRN) demonstration projects.

Additionally, the Board authorized providing up to $22 million to study ways to improve treatment of chronic low back pain, a leading cause of disability and one of the most frequent reasons adults seek medical care.
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Parent Champion Perspective on Engagement in Research

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Douglas Lunsford, a champion of obesity research, describes what led him to become an investigator for the PCORnet Antibiotic Use in Infants and Obesity Study in a PCORI blog.  In an accompanying video,  Mr. Lunsford’s states, “The more we as people interact with the medical community and the more they interact with us, it eliminates a … Continue reading Parent Champion Perspective on Engagement in Research

Advancing Research by Giving Patients Greater Access to Their Health Data

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Read more about Joe Selby and Sharon Terry’s participation in the Precision Medicine Initiative or PMI in a recent PCORI blog. PMI seeks to gather a range of health information—including genetic data, bio-specimens, clinical records, and information reported by patients themselves—from more than 1 million people. Its goal is to create a research resource that … Continue reading Advancing Research by Giving Patients Greater Access to Their Health Data

PCORI Announces PCORnet Partner Networks’ Pledge to Facilitate Patients’ Access to Their EHR Data

WASHINGTON, DC (Feb. 25, 2015) — Today at the Precision Medicine Initiative Summit at the White House, Joe Selby, MD, MPH, Executive Director of the Patient-Centered Outcomes Research Institute (PCORI), announced an initiative to enable individuals to access data in their electronic health records (EHRs) and share it for research that could improve care for their conditions.
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