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The Unsung Role Caregivers Play in People-Driven Research

Valentine’s Day is upon us, but when you are a caregiver for someone, there’s no need for a special day to show your love. For the 43.5 million unpaid caregivers in the United States, unconditional care that goes above and beyond is a constant daily practice. It’s not a stretch to say that these caregivers … Continue reading The Unsung Role Caregivers Play in People-Driven Research

Invisible No More: COPD PPRN Moves Research Forward to See the Full Picture

Authors: Elisha Malanga is the Chief Research Officer of the COPD Foundation, a patient-led advocacy organization dedicated to improving the lives of those affected by COPD and the prime organization for the COPD Patient-Powered Research Network (COPD PPRN). She has worked with the COPD Foundation since 2008 and has led numerous efforts including the creation of … Continue reading Invisible No More: COPD PPRN Moves Research Forward to See the Full Picture

Matching Patients to Clinical Trials for People Affected by Hereditary Cancers

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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

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

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

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”?

A Monumental Step Toward Understanding and Diagnosing Prosopagnosia (Face Blindness)

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Author: Christina Pressl, MD, Clinical Scholar and Investigator for New York City Clinical Data Research Network (NYC-CDRN), one of 13 Clinical Data Research Networks (CDRNs) funded by PCORI. Christina received her MD from the Medical University of Graz, Austria in 2009. She then spent the following three years of residency in Radiology at the General … Continue reading A Monumental Step Toward Understanding and Diagnosing Prosopagnosia (Face Blindness)

PCORnet Infrastructure Helps DINE-CD Demonstration Study Avoid “Reinventing the Wheel”

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Erin Gilroy, BS, was a Senior Research Coordinator in the Center for Clinical Epidemiology and Biostatistics at the University of Pennsylvania’s Perelman School of Medicine and Study Project Manager for the PCORnet DINE-CD Demonstration Study which began in March 2016. Gilroy is now attending nursing school. Most of us know the popular saying, “Don’t reinvent … Continue reading PCORnet Infrastructure Helps DINE-CD Demonstration Study Avoid “Reinventing the Wheel”

What Should I Eat? (The Burning Question in Crohn’s Disease)

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Author:  Carol Brotherton, PhD, MSN, BSN, the Co-Principal Investigator and Patient Representative for the DINE-CD, a PCORnet Patient Powered Research Network (PPRN) study funded by PCORI. Carol earned her nursing degree from the University of Delaware. She earned Masters and Doctoral degrees in Nursing from the University of Virginia. She discovered during 15 years of … Continue reading What Should I Eat? (The Burning Question in Crohn’s Disease)

Health Systems & PCORnet: Working Together to Answer Crucial Questions

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Authors: Rainu Kaushal, MD, MPH, is the chair of the Department of Healthcare Policy and Research, executive director of the Center for Healthcare Informatics and Policy (CHiP), executive director of the Health Information Technology Evaluation Collaborative (HITEC), and the Nanette Laitman Distinguished Professor of Healthcare Policy and Research at Weill Cornell Medicine. She is the principal investigator … Continue reading Health Systems & PCORnet: Working Together to Answer Crucial Questions