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When Opportunity Knocks: PCORnet’s ‘Front Door’ Offers Researchers Fast, Easy Access to Rich Data

PCORnet, the National Patient-Centered Clinical Research Network, a PCORI initiative, is increasingly generating buzz as a game-changer in clinical research. The Network has been described in many ways: a bridge that unites patients, families, providers, and researchers; a learning health system with the power to drive more meaningful, faster, and less costly patient-centered insights; and … Continue reading When Opportunity Knocks: PCORnet’s ‘Front Door’ Offers Researchers Fast, Easy Access to Rich Data

Attending AMIA 2017? Here’s What You Need to Know

The American Medical Informatics Association (AMIA) is set to hold its biggest conference to date on November 4-8, 2017, in Washington, DC. Numerous PCORI and PCORnet colleagues will be there sharing leading-edge scientific research. AMIA’s 2017 Annual Symposium will host over 100 scientific sessions, presenting work spanning translational bioinformatics, clinical research informatics, public health informatics, … Continue reading Attending AMIA 2017? Here’s What You Need to Know

Matching Patients to Clinical Trials for People Affected by Hereditary Cancers

Author: Sue Friedman, DVM, is Executive Director for Facing Our Risk of Cancer Empowered (FORCE) which is a lead organization in PCORnet’s ABOUT Patient Powered Research Network (PPRN).  Friedman is a Co-Principal Investigator for ABOUT. It’s an exciting time for hereditary cancer research as the pace of new personalized medicine treatments and targeted therapies has … Continue reading Matching Patients to Clinical Trials for People Affected by Hereditary Cancers

PCORnet Executive Committee Welcomes Three New Members, Names New Chair

The PCORnet Council, the main governing body of PCORnet, has approved the slates for PCORnet’s Executive Committee, welcoming three new committee members and appointing a new committee chair. Kiely Law, research associate in the Department of Pediatrics at the Johns Hopkins School of Medicine and co-founder of the Interactive Autism Network (IAN), has joined the … Continue reading PCORnet Executive Committee Welcomes Three New Members, Names New Chair

PCORnet Leaders Speak Out at Public Workshop to Further Use of Real-World Evidence

The Duke Margolis Center for Health Policy and U.S. Food and Drug Administration (FDA) recently hosted a public workshop to discuss how to effectively use real-world evidence (RWE) – the insights gleaned from information collected outside of a clinical trial, such as electronic medical records—in drug development and regulatory decision-making. PCORI and its innovative initiative, … Continue reading PCORnet Leaders Speak Out at Public Workshop to Further Use of Real-World Evidence

PARTNERS PPRN Uses Health Literacy Tools to Empower Patients

Authors: Vincent Del Gaizo is the father of a systemic onset juvenile idiopathic arthritis patient diagnosed in 2001 at 15 months of age. For the past 12 years, he has been actively involved in the field of pediatric rheumatology research, directly contributing the patient voice and perspective to research initiatives in these rare diseases. He was … Continue reading PARTNERS PPRN Uses Health Literacy Tools to Empower Patients

CreakyJoints Recruits Over 11,000 Patients into ArthritisPower

CreakyJoints® recently announced that ArthritisPower™, the first ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions successfully completed enrolling 11,000 arthritis patients, fulfilling one of its primary contract requirements with the Patient-Centered Outcomes Research Institute (PCORI) more than 12 months ahead of schedule.  ArthritisPower is a free science-based, privacy-protected web and mobile … Continue reading CreakyJoints Recruits Over 11,000 Patients into ArthritisPower

PCORI Board of Governors Approves $27 Million for Projects Using PCORnet

As PCORnet, the National Patient-Centered Clinical Research Network, continues to expand and improve, more research projects are incorporating PCORnet resources and infrastructure. The Patient-Centered Outcomes Research Institute (PCORI) Board of Governors recently approved over $27 million to support four patient-centered research studies that are using PCORnet: A Non-Inferiority Comparative Effectiveness Trial of Physician-Led vs. Nurse-Led … Continue reading PCORI Board of Governors Approves $27 Million for Projects Using PCORnet

Save the Date: PCORI Annual Meeting Features PCORnet Workshop

The Patient-Centered Outcomes Research Institute’s (PCORI) Annual Meeting, taking place October 31st– November 2nd, will showcase the National Patient-Centered Clinical Research Network (PCORnet) in a special workshop: “PCORnet in Action: Utilizing PCORnet for Research.”  This workshop, occurring Thursday, Nov. 2nd, will focus on how to conduct research using PCORnet resources and infrastructure. It will include … Continue reading Save the Date: PCORI Annual Meeting Features PCORnet Workshop

PRIDEnet to Support Engagement of LGBTQ Community in NIH’s ‘All of Us’ Research Program

The San Francisco General Hospital Foundation (SFGHF) has been awarded $542,000 by the National Institutes of Health to engage sexual and gender minorities across the country in the All of Us Research Program, in part through outreach to PRIDEnet, a PCORnet Partner Network. Formerly known as the Precision Medicine Initiative Cohort Program, the All of … Continue reading PRIDEnet to Support Engagement of LGBTQ Community in NIH’s ‘All of Us’ Research Program