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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

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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

PCORnet Executive Committee Welcomes Three New Members, Names New Chair

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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

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

Diversity, Communication and Trust: Three PPRNs Share the Recipe for Effective Engagement in Rare Disease Research

Imagine you are a patient who has just been diagnosed with primary Nephrotic Syndrome. Your doctor explains to you that this is a rare kidney disorder and then hits you with the gut punch: there is no known cause, no cure, and no FDA-approved medication for treatment. We often think of rare conditions as something … Continue reading Diversity, Communication and Trust: Three PPRNs Share the Recipe for Effective Engagement in Rare Disease Research

Early Registration Open for PCORI Annual Meeting

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Early registration is now open for the PCORI Annual Meeting, which will take place Oct. 31- Nov. 2nd in Arlington, Va.  More than 1,000 members of the health care community will gather for this two-and-a-half day event which will include updates on how scientists, patients, caregivers, clinicians, payers, and others are working together to make … Continue reading Early Registration Open for PCORI Annual Meeting