News

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.

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.

New Brief Highlights How PCORnet® Resources Power Patient-Centered Kidney Research

Posted on by Jodi Snare

A new brief highlights how PCORnet® Studies are using the PCORnet infrastructure to conduct patient-centered research in nephrology. With chronic kidney disease (CKD) affecting about 35.5 million U.S. adults, and kidney stones becoming more common in children, adolescents, and young adults, nephrology research is critical for understanding treatment options and generating meaningful results for patients and caregivers.

The brief highlights the utility of PCORnet to support comparative clinical effectiveness research that can help patients make more informed decisions about their healthcare. Reflecting on her experience as the Principal Investigator for Empa DKD, Neha Pagidipati said, “We needed a network that could not only capture lab data across a broad enough population to meet our [diabetic kidney disease] DKD participant target, but also allowed us to track long-term outcomes in these patients. PCORnet resources offer the only networked datasets out there that could support this research.”

By leveraging PCORnet, researchers can access:

  • Data from everyday healthcare encounters with more than 47 million people annually across the U.S.
  • Proven, low-burden models for pragmatic research with minimal burden on participants
  • Patient input integrated across the study lifecycle

Ready to begin your next patient-centered study? Knock on the PCORnet® Front Door to get started.

Autism Acceptance Month Spotlight: From PCORnet® Data Reports to Patient-Centered Research Results

Posted on by Jodi Snare

April, celebrated as Autism Acceptance Month, offers an excellent opportunity to highlight the vital role PCORnet® plays in supporting research on intellectual and developmental disabilities (IDD). A recent data report shows the capacity of the PCORnet infrastructure to support such research, revealing that clinical sites in PCORnet® Clinical Research Networks (CRNs) provide services to over 62,000 individuals with autism and more than one million patients with attention deficit hyperactivity disorder (ADHD).

A personal connection

Brittney Manning is the director of Research and Operations for OneFlorida+, one of the PCORnet® CRNs involved in the data report query. Brittney manages the day-to-day operations, strategic planning, and clinical research projects in OneFlorida+, including those focused on IDD. Her interest in this type of research is also personal.

In 2023, Brittney’s 5-year-old son was diagnosed with type 1 autism. She felt lucky to live in Gainesville, Florida, a small town with a large academic medical center and more resources than other areas of Florida. “In some parts of the state, it’s very hard to find support groups. It’s hard to find resources, or maybe it’s even hard to get a diagnosis,” Brittney said. Even in Gainesville, it took her a year to get an appointment and receive a formal diagnosis for her son.

Brittney’s experience with her son’s diagnosis emphasized the importance of her work with OneFlorida+ and PCORnet. “I think the more intellectual and developmental disabilities are talked about and researched, and the more data becomes available nationwide, the faster we can improve healthcare for people living with these conditions,” she said.

Bringing new insights to light for IDD communities

The IDD report is a major resource for Brittney. In her work, she helps researchers determine what data is available and supports them in navigating from their research question to a grant application or proposal. “I think sometimes researchers are intimidated by PCORnet because it's so big and there's so much data,” she said. “Resources like the IDD data report offer a fabulous way to just start digging in and seeing what you can do.”

New funding pathways for IDD research are available, too. On April 1, the Patient-Centered Outcomes Research Institute® (PCORI®) released several funding opportunities, including one focused on research related to people with IDD, with special emphasis on oral health, gastrointestinal health, and improving care delivery. PCORI invites all interested investigators, regardless of affiliation or source of funding, to utilize the PCORnet infrastructure to support both interventional and observational research addressing health issues faced by people with IDD.

Ready to get started? If you’re interested in conducting national-scale research into IDD, contact the PCORnet® Front Door to start the conversation.

New PCORnet® Data Report Provides Insights on Patient Populations Receiving Gene Therapy

Posted on by Jodi Snare

A new Gene Therapy Data Report is now available, offering researchers and the public timely insights into patients receiving gene therapies within healthcare settings across the PCORnet® infrastructure. As gene therapy development and approval rapidly advance, closing evidence gaps has become increasingly important to help patients make more informed healthcare decisions. This report provides a focused look at the rich, real-world patient data available through PCORnet® Clinical Research Networks—data that could potentially drive future comparative clinical effectiveness research on the long-term outcomes of approved gene therapies.

The Gene Therapy Data Report demonstrates that the PCORnet® infrastructure has the capacity to support national-scale studies on gene therapy. The report describes the characteristics of patient populations who received gene therapy for different health conditions between January 1, 2016 and June 30, 2024, including distinct cohorts for cancer patients and noncancer patients. Data from 72 sites participating in PCORnet are included in this report, reflecting the experience of more than 52,000 patients. These data are standardized from healthcare settings using the PCORnet® Common Data Model, meaning they are ready for researcher analysis.

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

The PCORnet infrastructure offers access to a broad range of patient populations and standardized data, streamlining the research process while maintaining rigorous privacy protections. Interested in conducting national-scale research in one of the areas highlighted in the data reports? PCORnet may be used by all interested investigators, regardless of affiliation or source of funding. Contact the PCORnet® Front Door to start the conversation.

Connect with PCORnet® on LinkedIn

Posted on by Jodi Snare

PCORnet® is on LinkedIn. Our channel serves as a vibrant hub where researchers, healthcare professionals, patients and organizations collaborate to advance patient-centered comparative clinical effectiveness research (CER) on a national scale.

By following PCORnet on LinkedIn, you’ll gain:

  • Real-time updates on PCORnet infrastructure developments
  • Connections with leading researchers and though leaders
  • Access to events and collaboration opportunities with PCORnet® Network Partners.

Follow PCORnet now to be a part of the conversation shaping the future of health research. Together, we’re building the nation’s capacity to efficiently conduct patient-centered CER through powerful health data, research expertise and invaluable patient insights.