News and Events

New Resources Will Support Representativeness of PCORnet® Studies

Posted on by Jodi Snare

PCORnet® is a full-scale research infrastructure designed to make studies faster, easier, and more impactful.

And helping researchers design studies with confidence in their representativeness is a recent focus for PCORnet.

Because PCORnet is a national network connected to approximately 47 million patients who receive care each year, the network can be used to conduct a wide array of health studies, from pragmatic trials to retrospective observational research.

By comparison, the American Community Survey samples approximately 3.5 million households per year and while there is no national census for patients who receive healthcare in the U.S., the large size of PCORnet and the network’s demographic comparability to the U.S. suggest that a wide array of topics can be studied using the network. (See PCORnet Population Insights to review the collected data.)

Over the last year, the PCORnet Representativeness Project team has been working through the nuances of how to help clinical researchers optimize their use of PCORnet to enhance and evaluate the representativeness of a clinical study. The project will culminate in early 2026 with new resources for guiding researchers in their use of the PCORnet infrastructure.

“When we develop conclusions from research, we want these conclusions to apply to the people we will ultimately treat in the healthcare system,” said Carly Brantner, Assistant Professor of Biostatistics and Bioinformatics at the Duke School of Medicine and the Duke Clinical Research Institute (DCRI) and a member of the PCORnet Representativeness Project team.

“Part of the challenge of this project is conceptualizing who those people are and thinking through the best ways to compare a study sample with this target group of people to whom we want our findings to apply,” said Brantner.

Brantner recently joined the Casual Inference podcast to talk about how the PCORnet infrastructure can support investigators in thinking about ways to generate relevant samples using a national network.

“Because PCORnet is so large, descriptive data in prep-to-research data queries can help investigators identify patient populations to recruit from and benchmarks to which they can compare their study samples,” she said.

The Casual Inference podcast is hosted and sponsored by the American Journal of Epidemiology. It holds casual, accessible conversations with guests around topics in epidemiology, statistics, data science, causal inference, and public health.

Laine Thomas, Professor of Biostatistics and Bioinformatics at Duke and Deputy Director of Data Science and Biostatistics at the DCRI and the lead of the PCORnet Representativeness Project, acknowledged the inherent challenges in achieving representativeness.

“While the target population can be conceptualized based on eligibility criteria, having a dataset of all people that meet those criteria can be a tall order,” said Thomas. “What makes a dataset a gold standard is how closely the actual data set matches the ideal conceptual target population.”

New Tools

Helping investigators get as close a match as possible is the goal of the representativeness project, said Thomas. “Through this work we hope to show that PCORnet is not only a data network but a design tool to make research more representative from the start.”

The PCORnet Representativeness Project is developing resources to help researchers assess their PCORnet® Studies for representativeness.

The project is expected to conclude by March 2026, said Thomas, resulting in a tutorial on approaches for assessing representativeness of a study design relative to the network’s many resources. The team is also preparing manuscripts for peer review and has contributed content to the online PCORnet® Playbook.

Thomas herself will be able to use these new tools directly because she is part of the leadership team of a newly designated PCORnet® Study called Comparative Effectiveness of Emerging Medications in Children with Inflammatory Bowel Disease (COMPARE).

In her podcast discussion, Brantner looked ahead to these new tools.

“When a researcher does a study using PCORnet, we want to help make their studies representative,” said Brantner. “PCORnet can help guide that process.”

 

Interested in conducting national-scale research? PCORnet may be used by all interested investigators, regardless of affiliation or source of funding. Contact the PCORnet® Front Door to get started.

 

New PCORnet® Population Insights Report Describes Nearly 47 Million Patients Across the Network

Posted on by Jodi Snare

A new Population Insights Report provides researchers and the public with an enhanced understanding of patients who received care within healthcare settings across sites participating in PCORnet®.

The report, Characteristics of the Patient Population Receiving Health Care Services Across Clinical Research Networks Participating in PCORnet®, can help researchers understand the capability of PCORnet data resources to answer research questions and recruit patients for future research powered by PCORnet. Highlights from the report include demographic, geographic, and care setting insights from the PCORnet® Clinical Research Networks (CRNs).

The new report demonstrates how the infrastructure offers access to a broad range of patient populations and standardized data, streamlining the research process while maintaining rigorous privacy protections. Access to PCORnet data resources helps researchers design and implement large-scale, innovative, patient-centered health research.

A Detailed Look at Patient Demographics

The Population Insights Report offers a comprehensive overview of the demographics of nearly 47 million patients who had at least one healthcare encounter at a site participating in PCORnet between January 1, 2024 and December 31, 2024. The patient population represented in the data includes a wide range of ages, races, and ethnicities for males and females.

The data in the report represent information recorded in electronic health records from patients across all 50 U.S. states. This means researchers can design projects and include groups in their studies that are representative of different communities and varying levels of urbanization. The report also includes healthcare visits that took place at a variety of care settings, including:

  • Ambulatory Visits
  • Emergency Department Visits
  • Emergency Department to Inpatient Stays
  • Inpatient Hospital Stays
  • Non-Acute Institutional Stays
  • Observation Stays
  • Telehealth Visits

In addition to the new report, other topic-specific reports are also available that characterize the extensive, real-world patient data available through PCORnet data resources, including:

Highlights and illustrations from the new Population Insights Report are available to view on the Population Insights webpage.

Interested in conducting national-scale research? PCORnet may be used by all interested investigators, regardless of affiliation or source of funding. Contact the PCORnet® Front Door to get started.

A New PCORnet® Playbook Module Offers Guidance on Sharing Research Results to Improve Health Outcomes

Posted on by Jodi Snare

Researchers who partner with PCORnet® have access to unique representative health data, research expertise, and patient insights. Whether you are a new or an experienced researcher, the PCORnet® Playbook is your go-to guide for navigating the PCORnet infrastructure, tapping into expert support, and integrating patient perspectives into your research from the start.  

A new PCORnet® Playbook module, Module 4: Sharing Your Research Results, is now available to guide you in broadly disseminating your research findings in ways that are meaningful and actionable to improve health outcomes. Module 4 describes several dissemination strategies and methods that may be used by a variety of studies, along with resources and examples to inspire you as you’re developing your own dissemination plan.  

This latest module expands the information available in the PCORnet® Playbook, which currently includes: 

  • Module 1: Introduction – Get to know the PCORnet infrastructure and the types of research the network supports.  
  • Module 2: Getting Started with PCORnet – Learn how to access network resources through the PCORnet® Front Door.  
  • Module 3: Using PCORnet to Power Your Research – Discover the no-cost services available when you contact the PCORnet® Front Door. 
  • Module 4: Sharing Your Research Results – Explore effective dissemination and implementation in PCORnet@ Studies. 

Find the full PCORnet® Playbook here.  

The well-established infrastructure of PCORnet supports study teams in delivering fast, trustworthy answers that advance health outcomes. Thoughtful dissemination strengthens the connection between research findings and real-world impacts, helping patients make better-informed decisions about their health and health care.  

Ready to Get Started? 

If you’re preparing for your next patient-centered study, the PCORnet® Playbook is a great place to begin. When you’re ready to learn how the network can support your research, knock on the PCORnet® Front Door to start the conversation.  

2025 PCORI Annual Meeting Will Showcase How PCORnet® Supports Engaged Comparative Clinical Effectiveness Research and Maternal Health Research

Posted on by Jodi Snare

At the 2025 PCORI Annual Meeting on October 21 and 22, two breakout sessions will highlight how researchers have leveraged the PCORnet® infrastructure to accelerate patient partnership and workforce development for comparative clinical effectiveness research (CER) teams, and how researchers are harnessing PCORnet data resources to improve maternal outcomes.

  • Leveraging PCORnet® To Accelerate Patient Partnership and Workforce Development for CER Teams | October 21, 2:15 – 3:30pm
  • Harnessing PCORnet® Data Resources to Inform CER in Postpartum Hemorrhage | October 21, 4:00 – 5:15pm

Explore the full agenda  and read more below about how these sessions will highlight PCORnet.

Accelerating Patient Partnership and Workforce Development

Patient engagement is critical to successful CER, but engaging patients in large-scale research requires the resources and workforce development to support their successful involvement.

At a breakout session on October 21 at 2:15pm, hear from Lindsay Mayberry, PhD, one of the lead investigators for the Coordinating Center for PCORnet®, and Jeff Ordway, Patient Partner and fellow co-investigator, on how Patient Partners and research staff are using the PCORI-funded PCORnet infrastructure to build teams that are better equipped to participate in patient-centered CER and discover how this collaboration can transform both studies and careers.

This session will feature the strength of PCORnet—for those interested in learning more, representatives from the network will be at the meeting to answer specific questions and provide more information and resources.

Powering Maternal Health Insights

At a breakout session at last year’s Annual Meeting, researchers demonstrated how PCORnet powers patient-centered comparative clinical effectiveness research that is shedding light on solutions to improve maternal outcomes. This year, at a breakout session on October 21 at 4:00pm, PCORnet researchers will delve into one particular life-threatening condition, postpartum hemorrhage (PPH).

Rates of PPH have steadily risen in the United States over the last two decades. In this panel, patient advocates, clinicians, and subject matter experts will share their perspectives on preventing, diagnosing, and treating PPH and will explore the potential of emerging therapies through case examples. They also will discuss how PCORnet data resources, such as the Population Insights Reports, could inform future patient-centered CER on this pressing maternal health condition.

Population Insights Reports are inquiries into the types of data available in the PCORnet research network and are made public so anyone can view or access it. An updated report on women receiving health care services at clinical sites across PCORnet is now available. This report offers insights into the capacity of the network to support meaningful research focused on women’s health, including conditions such as PPH.

For those attending the PCORI Annual Meeting, be sure to stop by these two breakout sessions on October 21. Attendees are encouraged to stop by the PCORI information booth to learn more about how PCORnet can support national-scale research. If you can’t make these sessions or the Annual Meeting but want to learn more about PCORnet, contact the PCORnet® Front Door to get started.

Strengthening Clinical Research Network Collaboration and Community Health Center Participation in PCORnet® Studies

Posted on by Jodi Snare

September 26, 2025  
8 am – 4 pm (PT)  
Portland, OR  

This event has ended.  View the event summary report here.

ADVANCE CRN is hosting a regional information session in Portland, OR. This event is ideal for researchers, providers, and patients who want to learn more about the research capabilities enabled by PCORnet.

A New PCORnet® Population Insights Report Highlights the Capacity of the Network to Support Meaningful, Patient-Centered Research on Women’s Health

Posted on by Jodi Snare

Each year, PCORnet® connects researchers with health data from more than 47 million people nationwide through eight PCORnet® Clinical Research Networks, enabling large-scale, innovative, patient-centered health research. The infrastructure of PCORnet offers access to a broad range of patient populations and standardized data, streamlining the research process while maintaining rigorous privacy protections. A new PCORnet® Population Insights Report on women receiving health care services at clinical sites across PCORnet is now available, offering insights into the capacity of the network to support meaningful research focused on women’s health.

The report offers a comprehensive overview of the demographics and health conditions of more than 35 million women who received healthcare services at 71 sites participating in PCORnet between January 1, 2019, and December 31, 2023. Patients were included in the report if they were routinely seeking care for given diagnoses.

This Population Insights Report is a crucial resource for researchers, enabling them to assess how PCORnet resources can be used to conduct national-scale, patient-centered comparative clinical effectiveness research to improve women’s health. Three tables in the report highlight different characteristics of women receiving health care services across PCORnet:

  • Demographics
  • Procedures and medication use
  • Co-occurring and additional health conditions, such as
    • Alzheimer’s Disease or Alzheimer’s Disease Related Dementias
    • Atherosclerotic Cardiovascular Disease
    • Autoimmune Diseases
    • Breast Cancer
    • Depression and Mood Disorders
    • Endometriosis
    • Hypothyroidism
    • Menopause
    • Osteoporosis
    • Uterine Cancer

This report highlights the potential for researchers to use the power of PCORnet® to conduct patient-centered studies on a wide range of conditions that affect women’s health and to deliver fast, trustworthy answers that advance health outcomes.

Population Insights Reports are also available for other areas of research including gene therapy, maternal morbidity and mortality, telehealth, intellectual and developmental disabilities, mental and behavioral health, and the pediatric population across PCORnet. Most offer the largest national query of real-world data on health conditions, populations, or service utilization. Read them all.

Interested in conducting national-scale research in one of the areas highlighted in the Population Insights Report? PCORnet may be used by all interested investigators, regardless of affiliation or source of funding. Contact the PCORnet® Front Door to get started.

Two New PCORnet® Studies Aim to Advance Patient-Centered Research in Important Clinical Areas

Posted on by Alexis

Two new PCORnet® Studies are leveraging the PCORnet infrastructure to conduct patient-centered comparative clinical effectiveness research, aiming to fill critical gaps in clinical care knowledge in previously hard-to-study areas.

The first new PCORnet® Study, Rationale and Design of the Tube Size Randomized Trial during Emergency Tracheal Intubation (BREATHE), will be the first PCORnet® Study looking at the ER intubation process. Each year, 1.5 million people are intubated in the ER and while most survive, around 50 percent suffer vocal cord injuries. The BREATHE Study will compare the effect of using a smaller endotracheal tube versus using a larger endotracheal tube during ER and ICU intubations. It will compare outcomes that patients care about including time off a breathing machine, and breathing and speaking ability. The study will use patient-preferred communication methods like phone, text, or email to collect data.

This study, scheduled to begin enrollment this month, will be led by Principal Investigator Jonathan Casey, MD, MSCI, assistant professor of medicine at Vanderbilt University Medical Center and lead partner in the PCORnet Science, Technology, and Research (STAR) Clinical Research Network. Aligned with the patient-centered approach of PCORnet, patient and community engagement efforts were central to the design of the study. Patients reviewed study questions and researchers used the gathered insights from community engagement studios as well as surveys of patients and clinicians across the STAR network to shape the study.

This comparative clinical effectiveness research study will help doctors understand if using a smaller breathing tube prevents long-term problems with breathing, speaking, and swallowing, and how different breathing tube sizes may affect a patient’s recovery.

The second new PCORnet® Study, Comparative Effectiveness of Emerging Medications in Children with Inflammatory Bowel Disease (COMPARE), will compare the most commonly prescribed new treatments for children with pediatric inflammatory bowel diseases (PIBD). For up to half of youth with moderate to severe PIBD, anti-TNF therapies don’t work. Although new treatments for inflammatory bowel disease are available, they are often used off-label to treat PIBD because the medications have only been approved for use in adults.

The study team, led by Principal Investigator Michael Kappelman, MD, MPH, professor of pediatrics and epidemiology at the University of North Carolina School of Medicine, used the PCORnet® Common Data Model to identify potential participants for this observational study – children with Crohn’s disease or ulcerative colitis who were treated with standard anti-TNF therapies – at 30 sites participating in PCORnet. The study team also hosted community engagement studios and a listening session with former pediatric patients and parents of current patients to learn what is most important to patients and to get their input on the design of the study.

The COMPARE Study will fill a gap in clinical treatment knowledge for children with PIBD by studying the effectiveness, safety, and differences in how well the treatments work across groups of young participants. Results from this study will help patients, their caregivers, and doctors better understand new treatments options and improve care for children with PIBD.

Get an overview of PCORnet and learn more about both studies on the PCORnet Studies webpage.

Ready to learn how the infrastructure of PCORnet can support your next patient-centered study? Contact the PCORnet® Front Door to start the conversation.

Introducing the PCORnet® Playbook: Your Guide to Research Success

Posted on by Jodi Snare

Over the past decade, PCORnet® has evolved into a robust, national resource that’s supported hundreds of studies aimed at advancing patient-centered comparative clinical effectiveness research. By harnessing the power of large-scale data, collaboration, and research expertise, the PCORnet infrastructure helps researchers accelerate discoveries that truly matter to patients and their caregivers.

Now, there’s a new resource designed to help you make the most of everything PCORnet has to offer: the PCORnet® Playbook.

Whether you’re a new or an experienced researcher, the PCORnet® Playbook is your go-to guide for navigating the PCORnet infrastructure, tapping into expert support, and integrating patient perspectives into your research from the start.

What Is the PCORnet® Playbook?

The PCORnet® Playbook is a comprehensive, step-by-step resource that helps researchers successfully plan and carry out studies using PCORnet infrastructure resources. It’s packed with practical tools, best practices, and insights that make it easier to conduct high-quality, patient-centered research at scale.

Through the PCORnet® Playbook, you will learn:

  • How to design high-quality, large-scale research projects using PCORnet services, including engagement, data, and network collaboration support.
  • What to expect when collaborating with PCORnet® Network Partners.

Module 1: Introduction

Get to know the PCORnet infrastructure and the types of research the network supports. This module helps you understand what makes PCORnet unique and how your research goals can align with its capabilities.

Module 2: Getting Started with PCORnet

Learn how to access network resources through the PCORnet® Front Door. This module also walks you through applying for PCORnet® Study designation, a status that opens up valuable resources and benefits.

Module 3: Using PCORnet to Power Your Research 

Discover the no-cost services available when you contact the PCORnet® Front Door, including:

  • Study Feasibility Reviews
  • Network Collaborator Requests
  • Data Network Requests

You’ll also get insights into PCORnet administrative tools that streamline study startup and site management processes, as well as general pricing guidance once your study progresses beyond the initial planning phase.

More Modules Coming Soon

The PCORnet® Playbook will continue to evolve as the network grows, so you can expect even more tools and guidance in the future. Start exploring the PCORnet® Playbook today and unlock the full potential of PCORnet for your research.

Ready to Get Started?

If you’re preparing for your next patient-centered study, the PCORnet® Playbook is a great place to begin. When you’re ready, knock on the PCORnet® Front Door and start the conversation about how the network can support your research.

Upcoming Best Practice Session Highlights Lessons Learned from a Congenital Heart Initiative Study

Posted on by Jodi Snare

Join us for the next PCORnet® Best Practice Sharing Session to discover the impactful research PCORnet can power!

May 22 Best Practice Sharing Session

  • Date: Wednesday, May 22
  • Time: 2:00 pm ET

This session will spotlight the PCORnet® Study: “Utilizing PCORnet to support transition from pediatric to adult centered care and reduce gaps in recommended care in patients with congenital heart disease.”

Part of the broader Congenital Heart Initiative: Redefining Outcomes and Navigation to Adult-Centered Care (CHI-RON), the study characterizes gaps in care for this population and examines the impact of gaps in recommended care on outcomes important to individuals with congenital heart disease and those that provide care for them.

Featured Speakers:

  • Anitha John, MD, PhD – Children’s National
  • Thomas Carton, PhD, MS – Louisiana Public Health Institute

They will share valuable insights and lessons learned for building a patient-centered, comparative clinical effectiveness research infrastructure for a heterogeneous group of rare diseases by linking registry, electronic health record, and health insurance claims data across 12 institutions participating in PCORnet.

What Are Best Practice Sharing Sessions?

These monthly forums bring together researchers, clinicians, and community members to exchange ideas, improve methods and explore innovative uses of the PCORnet infrastructure to advance health research.

Who Can Join?

The sessions are open to the public. Anyone interested in leveraging the PCORnet infrastructure for health research is welcome.

To receive a calendar invite, email [email protected].