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PCORnet: Achievements and Plans on the Road to Transforming Health Research

Date: December 15, 2015

Authors: Joe Selby, MD, MPH; Rachael Fleurence, PhD; Adrian Hernandez, MD, MPH; Peter Margolis, MD, PhD; Richard Platt, MD, MSc; Sharon Terry, MA

Two years ago, PCORI began an ambitious journey to find a faster, less expensive, more powerful way to conduct comparative clinical effectiveness research (CER). That’s when our Board of Governors approved an initial $100 million investment in PCORnet, the National Patient-Centered Clinical Research Network. The goal: work with patients, researchers, clinicians, and health systems leaders to build and run a network using standardized electronic health record information, from multiple delivery systems covering tens of millions of patients, to conduct research addressing the real-world needs of patients and those who care for them.
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Extensive Aspirin Study Uses Stakeholder Input to Work Out Protocol

Date: December 10, 2015
Author: Matthew Roe, MD, ADAPTABLE Principal Investigator, Duke University

A clinical trial that proposes to enroll 20,000 patients with a budget of less than $1,000 per participant is sure to raise eyebrows in the research world. But even before it enrolled its first participant, the ADAPTABLE trial has broken new ground in clinical research—by drawing on the wisdom of patients, doctors, and researchers in designing the trial itself.
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Researchers Say Their Path To Better Health Starts With Patients’ Input

In an article in Kaiser Health News, Guy Gugliotta discusses how PCORI as an independent organization charged with bringing health care professionals and patients together in cooperative research ventures to find the best treatments for ailments ranging from diabetes to depression, and last month opened the second phase of a program (PCORnet) to create research networks covering specific diseases and involving millions of patients across the country.
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Spotlight on a Patient-Powered Research Network

In its September newsletter, the patient advocacy group Facing Our Risk of Cancer Empowered (FORCE) highlights its participation in ABOUT (American BRCA* Outcomes and Utilization of Testing). ABOUT is one of the Patient-Powered Research Networks (PPRNs) that are an important part of PCORnet, the National Patient-Centered Clinical Research Network, which PCORI is developing.
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NIH Health Care Systems Research Collaboratory offers new perspectives on clinical research

September 15, 2015 – A special series of articles addressing the ethical and regulatory challenges to pragmatic clinical trials appears this week on the website of the journal Clinical Trials. The 12 articles were sponsored by the NIH Health Care Systems Research Collaboratory with additional support from the Patient-Centered Outcomes Research Institute, and include authors … Continue reading NIH Health Care Systems Research Collaboratory offers new perspectives on clinical research

PCORI Awards $9 Million for Research on Weight Loss Surgery and Childhood Obesity

The Patient-Centered Outcomes Research Institute (PCORI) Board of Governors today approved $9 million to fund two research studies focused on the treatment and prevention of obesity in children and adults. The research teams will use the partnerships and secure data resources of PCORnet, the National Patient-Centered Research Network, to fill key evidence gaps about this important health issue.
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Leveraging PCORnet and Health Data to Make Gains against Obesity

Date: August 18, 2015
Authors: Rachael Fleurence, PhD, Program Director, CER Methods and Infrastructure, PCORI and Joe Selby, MD, MPH, Executive Director, PCORI

Obesity is at epidemic levels in the United States. About 30 percent of American adults are considered obese, with 5 percent severely obese, and among adolescents (ages 12-19), 20 percent are obese.
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