Table 2.
PCORnet patient-powered research networks
| Patient-powered research network | Organization(s) | Condition(s) |
|---|---|---|
| Multiple Sclerosis Patient-Powered Research Network | Accelerated Cure Project for Multiple Sclerosis, Feinstein Kean, Life Data Systems | Multiple sclerosis |
| Sleep-Apnea-Patient-Centered Outcomes Network (SA-PCON) PPRN | American Sleep Apnea Association, Brigham and Women’s Hospital, Group Health, Morehouse Medical School, NYU and Columbia, ResMed, Sleep Research Network | Sleep apnea |
| ImproveCareNow: A Learning Health System for Children with Crohn’s Disease or Ulcerative Colitis | Cincinnati Children’s Hospital Medical Center, ICN Registry | Pediatric inflammatory bowel disease |
| The COPD Patient-Powered Research Network | COPD Foundation, CONCERT, COPD GENE | Chronic obstructive pulmonary disease |
| CCFA Partners Patient-Powered Research Network | Crohn’s and Colitis Foundation of America, Chronology, Patients Know Best, Validic, University of North Carolina | Inflammatory bowel disease |
| Arthritis Patient Partnership with Comparative Effectiveness Researchers (AR-PoWER PPRN) | Global Healthy Living Foundation, University of Alabama CERTS, Creakyjoints, CORRONA, American College of Rheumatology | Inflammatory arthritis |
| Mood Patient-Powered Research Network | Massachusetts General Hospital, Partners Health Care System | Major depressive disorder and bipolar disorder |
| The Health eHeart Alliance | University of California, San Francisco, American Heart Association | Cardiovascular health |
| American BRCA Outcomes and Utilization of Testing Patient-Powered Research Network (ABOUT Network) | University of South Florida, FORCE, Michigan Dept. of Community Health, Genomics, and Genetic Disorders | Hereditary breast and ovarian cancer |
| ALD Connect, | ALD Connect, Inc, Kennedy-Krieger Institute at JHU, Massachusetts General Hospital, Stanford University, University of Minnesota, University of Utah | X-linked adrenoleukodystrophy |
| NephCure Kidney Network for Patients with Nephrotic Syndrome | Arbor Research Collaborative for Health, NephCure Foundation | Primary Nephrotic Syndrome, Focal Segmental Glomerulosclerosis, Minimal Change Disease, Membranous Nephropathy Multiple Sclerosis |
| Patients, Advocates and Rheumatology Teams Network for Research and Service (PARTNERS) Consortium | Duke University, Arthritis Foundation, Childhood Arthritis & Rheumatology Research Alliance (CARRA), Friends of CARRA, Lupus Foundation of America, Pediatric Rheumatology Care & Outcomes Improvement Network (PR-COIN) | Juvenile Rheumatic Disease |
| Rare Epilepsy Network (REN) | Epilepsy Foundation, Columbia University, Research Triangle Institute | Aicardi Syndrome, Lennox-Gastaut Syndrome, Phelan-McDermid Syndrome, Hypothalamic Hamartoma, Dravet Syndrome, Tuberous Sclerosis |
| Community Engaged Network for All (CENA) | Genetic Alliance, Inc, University of California Davis, University of California San Francisco | Alstrom syndrome, Dyskeratosis congenital, Gaucher disease, Hepatitis, Inflammatory breast cancer, Joubert syndrome, Klinefelter syndrome and associated conditions, Psoriasis, Metachromatic leukodystrophy, Pseudoxanthoma elasticum |
| Patient Research Connection: PI-Connect | Immune Deficiency Foundation, Chronic Granulomatous Disease Association, SCID Angels for Life, Foundation Wiskott-Aldrich Foundation | Primary immunodeficiency disease |
| The DuchenneConnect Patient-Report Registry Infrastructure Project | Parent Project Muscular Dystrophy, Patient Crossroads, Geisinger Health Systems, UCLA | Duchenne and becker muscular dystrophy |
| Phelan-McDermid Syndrome Data Network | Phelan-McDermod Syndrome foundation, Epilepsy Foundation, CMBI-Harvard Medical School | Phelan-McDermid syndrome |
| The Vasculitis Patient-Powered Research Network | University of Pennsylvania, U of South Florida, Vasculitis Clinical Research Consortium, Vasculitis Foundation | Vasculitis |