Newsroom

Limit Posts to: News | Blog

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.
Continue Reading

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.
Continue Reading

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.
Continue Reading

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.
Continue Reading

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.
Continue Reading

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.
Continue Reading