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Placing Arthritis Research in Patients’ Hands

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

“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

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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PCORnet’s Public Workshop on Building Trustworthiness: It’s Time to Walk the Talk

Scores of people — patients, researchers, and many other stakeholders — participated in the Building Trustworthiness in PCORnet meeting in Washington, DC, on March 28 and 29 to work on advancing a new model of research that is rooted in trust, honesty, and true partnerships between researchers and patients . Here are some key takeaways from that event.
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PCORI Board Approves $12.5 Million for PCORnet Patient-Powered 
Research Network Demonstration Projects

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

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

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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PCORI Board Approves $70 Million for New Patient-Centered Research Studies

WASHINGTON, DC (Jan. 26, 2016) — The Patient-Centered Outcomes Research Institute (PCORI) Board of Governors today approved $70 million for nine new patient-centered research projects focused on conditions ranging from ductal carcinoma in situ (DCIS), a type of very early-stage, localized breast cancer, to diabetes, chronic lung disease and migraines. With these latest awards, PCORI has now approved or awarded more than $1.2 billion in research funding to date.
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