PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE ® PCORnet, the National Patient-Centered Clinical Research Network Traditional health research hasn’t always focused on the questions and outcomes that matter most to patients and those who care for them. The current clinical research system is often slow, expensive, and does not make good use of the wealth of information available from routine healthcare delivery. To improve clinical research, PCORI is developing PCORnet, the National Patient-Centered Clinical Research Network. PCORnet will harness the power of health information to do research faster, at lower cost, and with greater power than previously possible. It is designed to help us address many important unanswered questions about healthcare options. PCORnet will engage patients, clinicians, and health systems in collaborative partnerships to support robust research using large volumes of information from electronic health records, claims databases, and other sources, including data from patients themselves. Patients are also involved in developing the rules under which PCORnet operates, including safeguards for data privacy and security. PCORI has invested more than $100 million to develop the key components of PCORnet: • 11 Clinical Data Research Networks (CDRNs), which are health system-based networks that securely collect health information during the routine course of patient care • 18 Patient-Powered Research Networks (PPRNs), which bring together patients and communities to discover, propose, and answer relevant research questions and become engaged in the whole research process • A Coordinating Center, which provides technical and logistical support to the data networks and assists in program evaluation STRUCTURE OF PCORnet Governance Data Privacy ® PCORnet Steering Committee COORDINATING CENTER • Each Clinical Data Research Network (CDRN) • Each Patient-Powered Research Network (PPRN) • Patients • HHS Agencies (NIH, FDA, AHRQ, CDC, CMS, ONC, ASPE) • Medical Product and Device Manufacturers • PCORI and Coordinating Center Also includes members of PCORnet Executive Committee Project Mgmt. Office CDRNs Ethics & Regulatory Data Standards & Security Health System Interactions Patient & Consumer Engagement Patient-Generated Outcomes Clinical Trials Rare Diseases Biorepositories PPRNs Obesity pcori.org • [email protected] • Follow us @pcori PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE ® PCORI approved $93.5 million in awards to 29 individual data networks that together will form PCORnet. 11 Clinical Data Research Networks | $76.7 million in funding Network Lead Organization Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) The Chicago Community Trust National Pediatric Learning Health System (PEDSnet) The Childrens’ Hospital of Philadelphia Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS) Harvard University Medical School Kaiser Permanente & Strategic Partners Patient Outcomes Research To Advance Learning (PORTAL) Network Kaiser Foundation Research Institute Louisiana Clinical Data Research Network (LACDRN) Louisiana Public Health Institute Accelerating Data Value Across a National Community Health Center Network (ADVANCE) Oregon Community Health Information Network Patient-Oriented Scalable National Network for Effectiveness Research (pSCANNER) University of California San Diego Greater Plains Collaborative University of Kansas Medical Center PaTH: Towards a Learning Health System in the Mid-Atlantic Region University of Pittsburgh at Pittsburgh Mid-South CDRN Vanderbilt University Medical Center New York City Clinical Data Research Network (NYC-CDRN) Weill Medical College of Cornell University 18 Patient-Powered Research Networks | $16.8 million in funding Network Lead Organization Multiple Sclerosis Patient-Powered Research Network Accelerated Cure Project for Multiple Sclerosis ALD Connect ALD Connect, Inc. Sleep Apnea-Patient Centered Outcomes Network (SAPCON) American Sleep Apnea Association NephCure Kidney Network for Patients with Nephrotic Syndrome Arbor Research Collaborative for Health ImproveCareNow: A Learning Health System for Children with Crohn’s Disease and Ulcerative Colitis Cincinnati Children’s Hospital Medical Center The COPD Patient-Powered Research Network COPD Foundation, Inc. The CCFA Partners Patient-Powered Research Network Crohn’s and Colitis Foundation of America, Inc. The Patients, Advocates and Rheumatology Teams Network for Research and Service (PARTNERS) Consortium Duke University Rare Epilepsy Network (REN) Epilepsy Foundation Community-Engaged Network for All (CENA) Genetic Alliance, Inc. Arthritis Patient Partnership with Comparative Effectiveness Researchers (ARPoWER) Global Healthy Living Foundation PI Patient Research Connection: PI-CONNECT Immune Deficiency Foundation Mood Patient-Powered Research Network Massachusetts General Hospital (The General Hospital Corp.) DuchenneConnect Patient-Report Registry Infrastructure Project Parent Project Muscular Dystrophy Phelan-McDermid Syndrome Data Network Phelan-McDermid Syndrome Foundation The Vasculitis Patient-Powered Research Network The Trustees of the University of Pennsylvania Health eHeart Alliance University of California San Francisco American BRCA Outcomes and Utilization of Testing Patient-Powered Research Network (ABOUT Network) University of South Florida The Patient-Centered Outcomes Research Institute (PCORI) is an independent organization created to help people make better-informed healthcare decisions. pcori.org • [email protected] • Follow us @pcori
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