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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

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

The Power of Collaboration: A Glimpse Into PCORnet’s Commitment to Stakeholder Engagement

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PCORnet, the National Patient-Centered Clinical Research Network, an initiative of the Patient-Centered Outcomes Research Institute (PCORI), has put stakeholder engagement, particularly research participants, at the heart of its infrastructure. Operating as an extension of PCORI’s mission to bring patient voices to the forefront of research, PCORnet seeks to integrate a collaborative spirit across every aspect … Continue reading The Power of Collaboration: A Glimpse Into PCORnet’s Commitment to Stakeholder Engagement

People-Centered Research Foundation Names Kathy Hudson Executive Director

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The People-Centered Research Foundation (PCRF) announced today that Kathy L. Hudson, PhD, has joined the organization as executive director. Hudson most recently served as deputy director for Science, Outreach, and Policy at the National Institutes of Health (NIH). At the PCRF, she joins a team of national leaders in clinical research who established the nonprofit … Continue reading People-Centered Research Foundation Names Kathy Hudson Executive Director

Why Engage Patients at “Your Weight Matters”?

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Author: Kimberly Holmquist, MPH, Research Project Manager for Kaiser Permanente Southern California (KPSC) Research & Evaluation, the Lead Site for Kaiser Permanente & Strategic Partners Patient Outcomes Research To Advance Learning (PORTAL) Network and Lead Site for PCORnet secondary aim for bariatric studies. Kimberly started her career in medical research with the Centers for Disease Control … Continue reading Why Engage Patients at “Your Weight Matters”?