PCORnet’s Collaborative Research Groups

Figures & data

Table

PCORI	PCORnet funder
PCORnet	The National Patient-Centered Clinical Research Network – a network of networks funded by PCORI
PCORnet Common	The PCORnet Common Data Model is a way of organizing EHR data from different institutions into a standard
Data Model	structure (i.e., with the same variable name, attributes, and other metadata) that facilitates research queries across institutions
CDRN	Networks of health care systems that collect EHR data in a common data model format (the PCORnet Common Data Model) and support distributed research queries
PPRN	Networks operated and governed by patient groups and their partners, and are focused on particular conditions or populations
CRG	Groups that facilitate and nurture cross-network research collaboration within PCORnet, focused on broad conditions or populations
RIG	Small groups within CRGs developing collaborative research projects focused on a particular topic within the broad interests of a CRG
Computable phenotype	A computable phenotype is a phenotype defined by a data query. It can be used to define an outcome, a variable in an analysis, a set of patients to invite to join a clinical trial, and so on

Abbreviations: CDRN, Clinical Data Research Network; CRG, Collaborative Research Group; EHR, electronic health record; PCORI, Patient-Centered Outcomes Research Institute; PCORnet, Patient-Centered Clinical Research Network; PPRN, Patient-Powered Research Network; RIG, Research Interest Group.

Table 1 Characteristics and goals of PCORnet’s Collaborative Research Groups

CRG name	No of networks	Lead network(s)a	RIGs	Goals and focus areas
Autoimmune	10 CDRNs 8 PPRNs	AR-PoWER Vasculitis	• Pathway to diagnosis • Comparative effectiveness of biologic • Reproductive concerns of patients with ASIS conditions	Focus on research areas with crosscutting relevance for people living with ASIS conditions
Behavioral health	3 CDRNs 2 PPRNs	NYC CDRN CPPRN	• Adult mental health • Addiction prevention and treatment • Child and adolescent mental health	Goal to advance patient-centered mental health and substance use research through the PCORnet infrastructure
Cancer	8 CDRNs 2 PPRNs	GPC PORTAL ABOUT	• Cancer screening and diagnostic testing • Precision cancer medicine • Cancer survivorship and outcomes • Rural cancer control • Comparative effectiveness	Special emphasis is placed on developing informatics resources (e.g., adapting the Common Data Model to support cancer research, maintaining computable phenotypes), cultivating cross-network collaborations, and stimulating and assisting efforts to obtain extramural funding
Cardiovascular health	11 CDRNs 3 PPRNs	Health eHeart alliance LHSnet OneFlorida	• Atrial fibrillation • Hypertension • Congestive heart failure • Women and microvascular disease • Central nervous system • Adult congenital heart disease • Dyslipidemia	Goal to catalyze high-quality, impactful, patient-centered research focusing on cardiovascular disease and cardiovascular health using PCORnet
Diabetes and obesity	12 CDRNs 3 PPRNs	Mid-south OneFlorida	• Obesity prevention • Obesity management • Diabetes screening and prevention • Type 1 diabetes maintenance • Type 2 diabetes maintenance	Aim to advance the evidence base to drive value-based clinical decision making in diabetes and obesity care and prevention
Health disparities	8 CDRNs 4 PPRNs	ADVANCE PRIDEnet	• Health disparities experienced by racial and ethnic minorities • Social determinants of health • Health disparities experienced by sexual and gender minorities • Health disparities experienced by people with disabilities • Health disparities experienced by the economically marginalized and/or under- and uninsured	The overall goal of this group is to promote health equity for vulnerable populations by advising on and generating proposal concepts that are of value to our patients, providers, and communities
Health systems, health policy, and public health	12 CDRNs 2 PPRNs	NYC CDRN OneFlorida	• Health systems • Health policy • Public health	Focused on the intersection of research and health care delivery, health policy, and public health
Hospital medicine	9 CDRNs 3 PPRNs	pSCANNER Mid-south	• Outcomes of transferred patients • Inpatients with acute kidney injury • Geriatric care units • Observation status assignment in acute care facilities • Post-hospital outcomes • Early warning systems	Goal to advance the care of hospitalized patients by facilitating and conducting collaborative multicenter, research studies of approaches to improve outcomes of patients with acute illness. HOMERuN’s mission is to ensure that every hospitalized patient receives the best quality, safest, and highest value care from hospitalization through recovery
Kidney health	5 CDRNs 2 PPRNs	NKN pSCANNER Mid-south LHSnet	• Acute kidney injury • Chronic kidney disease progression • Glomerular disease • Kidney transplant • Polycystic kidney disease	Goal is to answer key questions about kidney disease epidemiology, practice variation, therapy, and the patient experience
Pediatrics	11 CDRNs 11 PPRNs	PEDSnet OneFlorida	• Autism • Cerebral palsy • Epilepsy • Pediatric hypertension • Sickle cell disease	Dedicated to supporting the development of multi-network research projects for children and adolescents, while advancing the sustainability of PCORnet as a research consortium
Pulmonary	4 CDRNs 1 PPRN	COPD PaTH	• COPD • Asthma • Pulmonary fibrosis	Focuses on a wide range of respiratory diseases (COPD, asthma, pulmonary fibrosis, OSA), which are highly prevalent in the US population, and is dedicated to promoting pulmonary research through PCORnet that is prioritized by both the scientific and patient communities

Note:

a Abbreviated PCORnet network names are provided here; full names and descriptions are provided at http://www.pcornet.org/participating-networks/.

Abbreviations: ADVANCE, Accelerating Data Value Across a National Community Health Center Network; ASIS, autoimmune and systemic inflammatory syndrome; CDRN, Clinical Data Research Network; CPPRN, Community and Patient Partnered Research Network; CRG, Collaborative Research Group; GPC, Greater Plains Collaborative; HOMERuN, Hospital Medicine Reengineering Network; LHSnet, Patient-Centered Network of Learning Health Systems; NKN, NephCure Kidney Network for Patients with Nephrotic Syndrome; NYC-CDRN, New York City Clinical Data Research Network; OSA, obstructive sleep apnea; PCORnet, Patient-Centered Clinical Research Network; PPRN, Patient-Powered Research Network; PORTAL, Partners Patient Outcomes Research To Advance Learning; pSCANNER, atient-centered SCAlable National Network for Effectiveness Research; RIG, Research Interest Group.