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People-Centered Research Foundation Established

The Patient-Centered Outcomes Research Institute (PCORI) Board of Governors has agreed to provide up to $25.4 million in additional infrastructure-building funds to support the long-term sustainability of PCORnet through a newly incorporated People-Centered Research Foundation (PCRF), a nonprofit formed this month by PCORnet investigators to advance and support the network’s sustainability.  Visit the PCRF Website … Continue reading People-Centered Research Foundation Established

iConquerMS™ Members Revamp Recruiting Materials to Reflect Community Preferences

Author: Laura Kolaczkowski, Co-Principal Investigator of iConquer Multiple Sclerosis Patient-Powered Research Network (MS-PPRN). Multiple Sclerosis (MS) Awareness Week (March 5-11th) is a weeklong national effort to increase awareness of MS, and provides an opportunity to examine how asking and listening to communities of patients can improve how we make connections between people living with chronic … Continue reading iConquerMS™ Members Revamp Recruiting Materials to Reflect Community Preferences

Getting to the Heart of Patient Needs: PCORnet’s Health eHeart Alliance PPRN & PaTH CDRN Find New Ways of Managing & Preventing Cardiovascular Disease

The American Heart Association, the Centers for Disease Control (CDC) and the Heart Foundation all mark February as a month to boost awareness and promote research that brings patients and providers practical solutions for the nation’s leading cause of morbidity and mortality: cardiovascular disease. According to the CDC, someone in the U.S. has a heart … Continue reading Getting to the Heart of Patient Needs: PCORnet’s Health eHeart Alliance PPRN & PaTH CDRN Find New Ways of Managing & Preventing Cardiovascular Disease

PCORnet Partner Network Inspires Alzheimer’s National Summit and Catalyzes New Digital Tools for Alzheimer’s Research

The National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network (AD-PCPRN) recently helped shape a National Alzheimer’s Summit in Washington, DC. AD-PCPRN is one of 20 Patient-Powered Research Networks of the National Patient Centered Clinical Research Network (PCORnet), an initiative funded by the Patient Centered Outcomes Research Institute (PCORI). AD-PCPRN is harnessing the collaboration of … Continue reading PCORnet Partner Network Inspires Alzheimer’s National Summit and Catalyzes New Digital Tools for Alzheimer’s Research

PCORnet Announces 11 Collaborative Research Groups to Speed Insights to Patients

The National Patient Centered Clinical Research Network (PCORnet), a PCORI initiative, today announced the launch of 11 Collaborative Research Groups (CRGs) designed to catalyze new multi-network research. Each CRG team is composed of content experts from within the Network focused on generating engaging, high-priority research questions that will help patients and clinicians make informed healthcare … Continue reading PCORnet Announces 11 Collaborative Research Groups to Speed Insights to Patients

PCORnet Welcomes New Member to Research Committee

On Friday, December 16, the PCORnet Council, the main governing body of PCORnet, approved the slates for the Engagement and Research Committees, welcoming one new committee member and re-electing five others. Marleah Dean Kruzel, PHD, a steering committee member for the American BRCA Outcomes and Utilization of Testing Patient-Powered Research Network (ABOUT), has joined the … Continue reading PCORnet Welcomes New Member to Research Committee

PCORnet-Designated Flu Dosing Study Pilots SMART IRB Approach

Flu season is upon us, and the The National Institute of Health (NIH)-funded INVESTED study is examining adults with heart disease who get infected with influenza, more commonly known as “the flu,” who are more likely to be at risk for heart attacks and hospitalization due to heart failure. Conducted through the National Patient-Centered Clinical … Continue reading PCORnet-Designated Flu Dosing Study Pilots SMART IRB Approach

PCORnet Commons Offers Collaborative Space for Conversation & Ideas

The PCORnet Commons website is now live! This new online space was created collaboratively with insight and feedback from across the PCORnet community with the goal of providing people with the opportunities to increase collaboration, efficiency, and people-centeredness in clinical research. The PCORnet Commons is a space for you to share resources, engage in dialogue, grow together, and learn from one another. On … Continue reading PCORnet Commons Offers Collaborative Space for Conversation & Ideas

PCORnet Community Rallies to Launch New Version of Common Data Model

PCORnet, the National Patient-Centered Clinical Research Network, is pleased to announce the release of the newest iteration of its Common Data Model (CDM), CDM v3.1. Initially released in three deployments between 2014 and 2015, the CDM is a way of organizing PCORnet’s broad and diverse data into a standard structure to enable a more rapid … Continue reading PCORnet Community Rallies to Launch New Version of Common Data Model

PCORnet’s Partner Networks Tackle Crohn’s, Colitis

Crohn’s and Colitis Awareness Week ends today, making this a great time to explore PCORnet’s efforts to tackle these two widespread forms of inflammatory bowel diseases (IBD), both of which are incurable and invisible. Two of PCORnet’s partner networks, the ImproveCareNow Patient Powered ResearchNetwork (PPRN) and the Crohn’s & Colitis Foundation of America (CCFA) PPRN, … Continue reading PCORnet’s Partner Networks Tackle Crohn’s, Colitis