Collaborative Research Groups

PCORnet’s Collaborative Research Groups (CRGs) catalyze new multi-network research. Each below CRG team is composed of content experts from within the Network focused on generating high priority, engaging research questions to leverage PCORnet’s unique infrastructure.

The CRGs collaborate with stakeholders including patients, caregivers, advocacy groups, providers, and funders early on to move research forward more quickly and more efficiently.

While the high-level focus of each CRG is broad, they may also contain Research Interest Groups (RIGs), that are dedicated to more specific research areas. For example, the Pediatrics CRG has specific RIGs for Autism, Cerebral Palsy, Epilepsy, Pediatric Hypertension, and Sickle Cell Disease.

In addition to developing high priority research questions, the CRGs develop common data elements relevant to the CRG focus area for use in the Common Data Model, advance the science of patient-centered outcomes and pragmatic research through innovative methods, and assist the PCORnet Front Door with research requests.

Autoimmune and Systemic Inflammatory Syndromes

Contact: Shilpa Venkatachalam, Project Manager

Primary Leads: Peter Merkel, MD, MPH and W. Benjamin Nowell, PhD (scroll on linked page for profile)

The Autoimmune and Systemic Inflammatory Syndromes Collaborative Research Group (ASIS CRG) brings together patients, clinicians, investigators, and other stakeholders within PCORnet to focus on research areas with crosscutting relevance for people living with ASIS conditions. The ASIS CRG is currently organized into three overlapping Research Interest Groups (RIGs):

  • Pathway to Diagnosis (predictive analytics for establishing diagnoses of autoimmune/systemic inflammatory diseases)
    • Lead: Antoine G. Sreih, MD (V-PPRN)
  • Comparative Effectiveness of Biologic (Immunosuppressive) Agents
    • Lead: Jeffrey R. Curtis, MD, MS, MPH (AR-PoWER PPRN)
  • Reproductive Concerns of Patients with ASIS Conditions
    • Lead: Megan E. B. Clowse, MD, MPH (Mid-South CDRN)
Cancer

Contact: Brad McDowell

Co-Leads: Elizabeth Chrischilles, Sue Friedman and Deb Ritzwoller

The PCORnet Cancer Collaborative Research Group supports multi-site, patient-centered pragmatic trials and observational studies through its network of eight CDRNs, two PPRNs, and two HPRNs. 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. Research foci are determined by participant and stakeholder interests.

Research Interest Groups:

  • Cancer screening and diagnostic testing
  • Precision cancer medicine
  • Cancer survivorship and outcomes
  • Rural cancer control
  • Comparative effectiveness
Cardiovascular Health

Contact: Madelaine Faulkner

Primary Lead: Mark Pletcher, MD, MPH

Co-Leads: Veronique Roger,MDRhonda Cooper-DeHoff, Pharm.D, MS, FAHA, FACC and Geoff Tison, MD, MPH

Lead Patient: Carlos Maeztu

The Cardiovascular Health Collaborative Research Group (CVH CRG) exists to catalyze high-quality, impactful, patient-centered research focusing on cardiovascular disease and cardiovascular health using PCORnet. We support communications and match-making between investigators with ideas about how to use PCORnet for research and potential PCORnet collaborators, we develop data resources in PCORnet relevant to cardiovascular health including preliminary data tables that can be used to support grant applications, and we support research interest groups focused on particular cardiovascular topics of interest.

Any researcher, patient, clinician or other stakeholder is eligible for membership in the CVH CRG given a stated interested in collaborating on PCORnet Studies with at least one specific cardiovascular health area of interest, and a commitment to respond to and facilitate “matchmaking” queries received from CVH CRG Leadership and to acknowledge support from the CVH CRG. All Members receive targeted communications and access to CVH CRG data resources and matchmaking services.

Research Interest Groups:

  • Atrial Fibrillation
  • Hypertension
  • Congestive Heart failure
  • Women and microvascular disease
  • Central Nervous System
  • Adult Congenital Heart Disease
  • Dyslipidemia
Diabetes and Obesity

Contact: Patricia Knoepp, MPH, CHES, Project Manager

Co-Leads: John Buse, MD, PhD, Russell Rothman, MD, MPP and Desmond Schatz, MD

Nationally, there are staggering resources invested in diabetes/obesity care, prevention and research. The Diabetes and Obesity Clinical Research Group provides investigators with the resources and support of PCORnet to develop stakeholder-engaged observational studies and pragmatic trials. Our diverse group of over 60 patients, primary care providers, subspecialists, epidemiologists, health services researchers, and other key stakeholders aim to advance the evidence base to drive value-based clinical decision-making in diabetes and obesity care and prevention.

Research Interest Groups:

  • Obesity Prevention
  • Obesity Management
  • Diabetes Screening & Prevention
  • Type 1 Diabetes Maintenance
  • Type 2 Diabetes Maintenance
Health Disparities

Contact: Rebecca Block, PhD, MSW

Co-Leads: Mitchell Lunn, MD, MAS and John Heintzman, MD, MPH

PRIDEnet and ADVANCE have partnered together to build a network of collaborators focused on disparities research, provide expert subject support to the PCORnet Front Door, and work internally and with other CRGs to build and execute research projects that address disparities, and promote equity in healthcare. This CRG also provides the PCORnet Data Committee with recommendations for enhancements to the PCORnet Common Data Model (CDM) to better support research in health disparities. 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.

Areas of Interest:

  • Health disparities experienced by racial and ethnic minorities
  • Social determinants of health
  • Health disparities experienced by sexual and gender minorities
  • Health disparities experienced by aging populations
  • Health disparities experienced by the economically marginalized and/or under- and uninsured

Research Interest Groups:

  • Racial & Ethnic Disparities
  • Social Determinants of Health
  • Sexual & Gender Minorities (SGM) / Sexual Orientation and Gender Identity (SO/GI)

Follow OCHIN on Facebook and Twitter.

Follow ThePRIDEStudy on Facebook and Twitter.

Health Services Research

Contacts: Andrea Cohen, MPA and Melanie Canterberry, PhD

Co-Leads: Rainu Kaushal, MD, MPH and Tom Carton, PhD

The aims of the Health Services CRG are:

  • To engage salient stakeholders and leverage the PCORnet CDM for population health and surveillance projects that promote significant scientific and business development opportunities.
  • To engage salient stakeholders and leverage the PCORnet CDM, i.e., the expansion and development of social determinant variables, and existing health system demonstration projects for health services research that promote significant scientific and business development opportunities.
Kidney Health

Contact: [email protected]

Primary Lead: Laura Mariani, MD, MSCE

Co-Leads: Debbie Gipson, MD, MS, Michael Matheny, MD, MS, MPH and Edward Siew, MD, MSCI

The Kidney Health CRG aims to facilitate clinical research that arises from patient-informed research questions and leverages the unique PCORnet dataset. Anchored by a team of informaticians and clinical researchers, the tools created by the CRG can be used by the research community to answer key questions about kidney disease epidemiology, practice variation, therapy, and the patient experience.

Kidney disease research is broad spanning, as it includes both rare and common diseases, numerous comorbid conditions, and relevance to virtually all demographic segments. The relationship of kidney disease to other major public health concerns such as cardiovascular disease and diabetes highlights the cross-disciplinary nature of kidney disease research, which has high potential to improve clinical decision-making and patient outcomes for millions of patients.

Research Interest Groups:

  • Acute Kidney Injury (AKI)
  • Chronic Kidney Disease (CKD) Progression
  • Glomerular Disease
  • Kidney Transplant
  • Polycystic Kidney Disease (PKD)
Pediatrics

Visit the Pediatrics CRG Webpage

Contact: [email protected]

Co-Leads: Christopher Forrest, MD, PhD and Betsy Shenkman, PhD

Recognition of the unique attributes of childhood that merit a special research focus is relatively new. The types, manifestations, and frequency of various diseases as well as the adverse event profile for medical treatments often differs between adults and children. Sadly, conditions such as hypertension and metabolic syndrome once considered adult problems have infiltrated childhood. Maturation of children’s physiology influences the qualitative and quantitative effects of medical products, which calls into question the use of hand-me-down results from medical product studies done among adults.

To address these and other pediatric challenges for PCORnet, we have developed a Pediatric Collaborative Research Group that is dedicated to supporting the development of multi-network research projects for children and adolescents, while advancing the sustainability of PCORnet as a research consortium.

Research Interest Groups:

Pulmonary

Contacts: Cara Pasquale and Anne Dimmock

Co-Leads: Barbara P. Yawn, MD, MSc and Rebecca Bascom, MD

The Pulmonary CRG 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. Despite their prevalence, many of the basic measures of lung health (spirometry, exercise tests, sleeps studies, etc.) are not readily and easily available in Electronic Medical Records (EMRs), impairing the ability of researchers to assess these patients accurately. The addition of these data to the CDM will dramatically increase the value of these databases to researchers and potential funders.

Research Interest Groups:

  • Chronic Obstructive Pulmonary Disease
  • Asthma
  • Pulmonary Fibrosis

Follow the Pulmonary Collaborative Research Group on Twitter.

Last updated on August 10, 2018