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 Autoimmune and Systemic Inflammatory Syndromes (ASIS) CRG has several overlapping RIGS, concerning Pathways to Diagnosis, Comparative Effectiveness of Immunosuppressive Agents, Reproductive Concerns of Patients with ASIS Conditions, and Vaccination among Patients with Autoimmune Conditions.

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 LeadsPeter 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 four 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
  • Vaccination among Patients with Autoimmune Conditions
    • Lead: Justin Owensby, PharmD, PhD, (AR-PoWER, UAB)
Cancer

Contact: Brad McDowell

Co-Leads: Elizabeth Chrischilles and Elizabeth Shenkman

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:  Rhonda Cooper-DeHoff, Pharm D, MS

Primary Lead:  Rhonda Cooper-DeHoff, Pharm D, MS

Co-Leads:  Elizabeth Nauman, MPH, PhD

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. We will engage with the PCORnet Coordinating Center to assess best practices for optimizing query development and fulfilment.

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
  • Central Nervous System
Diabetes and Obesity

Contact: Patricia Knoepp, MPH, CHES, Project Manager

Co-Leads: John Buse, MD, PhDRussell 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. In the next phase of funding, our CRG is planning on deepening the engagement of the American Diabetes Association (ADA) as a partner.

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: Melanie Canterberry from ReachNet and John Heintzman, MD, MPH

ADVANCE and ReachNet 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.
Pulmonary

Contacts: Cara Pasquale and Anne Dimmock

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

The Pulmonary CRG focuses on a wide range of respiratory diseases (COPD, asthma, pulmonary fibrosis, obstructive sleep apnea, bronchiectasis, sickle cell lung disease), which are highly prevalent in the US population. The CRG 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, sleep studies, etc.) are not readily and easily available in Electronic Medical Records (EMRs), impairing the ability of researchers to assess these patients accurately. The Pulmonary CRG has a range of data science interests to help advance that goal: pulmonary function interoperability; natural language processing; smoking and oxygen information; and patient-reported outcomes. The addition of these data to the CDM will dramatically increase the value of these databases to researchers and potential funders.

Research Interest Groups:

  • Asthma
  • Bronchiectasis
  • Chronic Obstructive Pulmonary Disease
  • Interstitial Lung Disease/Pulmonary Fibrosis

Follow the Pulmonary Collaborative Research Group on Twitter.

Last updated on November 7, 2018