Clinical Data and Patient-Powered Research Networks – Awarded Projects

The Patient-Centered Outcomes Research Institute (PCORI) approved $93.5 million on December 17, 2013, to support 29 clinical research data networks that together will form an ambitious new resource known as PCORnet, the National Patient-Centered Clinical Research Network. PCORnet will be a large, highly representative, national network for conducting clinical outcomes research. PCORnet will integrate data from 11 Clinical Data Research Networks (CDRNs) — networks that originate in healthcare systems such as hospitals, health plans, or practice-based networks and securely collect “real-time,” “real-world” health information during  the routine course of patient care – and 18 Patient-Powered Research Networks (PPRNs) — networks operated and governed by groups of patients and their partners who are focused on a particular condition and interested in sharing health information and participating in research.

Clinical Data Research Networks:

Project Title Organization
A National Pediatric Learning Health System The Childrens’ Hospital of Philadelphia
PaTH Towards a Learning Health System in the Mid-Atlantic Region University of Pittsburgh at Pittsburgh
Accelerating Data Value Across a National Community Health Center Network (ADVANCE) Oregon Community Health Information Network
Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) The Chicago Community Trust
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
New York City Clinical Data Research Network (NYC-CDRN) Weill Medical College of Cornell University
Patient-Oriented Scalable National Network for Effectiveness Research (pSCANNER) University of California San Diego
Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS) Harvard University Medical School
The Greater Plains Collaborative University of Kansas Medical Center
The Mid-South Clinical Data Research Network Vanderbilt University Medical Center

Patient-Powered Research Networks:

Project Name Organization
A 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 (AR-PoWER) 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

 

Posted December 17, 2013; Updated March 24, 2014