News

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.

Rare Disease Day Shines a Light on Lennox-Gastaut Syndrome Research Powered by PCORnet®

Posted on by Jodi Snare

Each year on the last day of February, Rare Disease Day raises awareness for the more than 30 million people in the U.S. living with rare diseases. In honor of Rare Disease Day, we are shining a spotlight on a PCORnet® Study addressing one such condition: Lennox-Gastaut Syndrome (LGS). LGS is a severe form of epilepsy that begins in early childhood, causing multiple types of drug-resistant seizures, cognitive impairments, and significant challenges for families seeking effective treatment options. LGS is a challenging condition to study due to its rarity and variability, but with access to insights from the everyday health encounters of 47 million people across the U.S., the PCORnet infrastructure is uniquely positioned to support this research.

Addressing the Challenges of Lennox-Gastaut Syndrome

Children and young adults with LGS may experience hundreds of seizures per week and are often unresponsive to standard treatments. Families navigating this complex disorder frequently face uncertainty about which therapies—whether additional medications or surgical interventions—will offer the best possible quality of life. The study, led by Principal Investigator Sandi Lam, MD, MBA, at Ann & Robert H. Lurie Children’s Hospital of Chicago, aims to address this question using the PCORnet infrastructure while also establishing foundational knowledge to support future research into LGS.

“One of the major challenges in studying LGS is that there is no established computable phenotype,” said Dr. Lam. “By leveraging the vast data resources available through the PCORnet infrastructure, we have an opportunity to develop a standardized way to identify LGS patients within electronic health records. This is critical because having a reliable method to identify and study LGS at scale can help researchers uncover new insights, improve diagnoses, and ultimately lead to better treatment options for these patients and their families.”

Once the computable phenotype is established after multicenter manual chart review of almost a thousand patients, the study team will use it to conduct a comparative clinical effectiveness study exploring the records of thousands of patients to determine whether medication or surgery is most likely to improve the clinical outcomes important to children with LGS and their caregivers.

PCORnet: Unique Advantages for Patient-Centered Rare Disease Research

The study involves five PCORnet® Clinical Research Networks (CRNs) working together to provide comprehensive, high-quality data:

  • Greater Plains Collaborative (GPC)
  • OneFlorida+
  • PaTH
  • PEDSnet
  • STAR

As with all PCORnet® Studies, a key component of this research is its strong patient engagement approach. In partnership with the LGS Foundation, researchers are incorporating insights from families living with LGS to ensure the study reflects what matters most to patients. One aspect of this work focuses on gathering input from patients and their caregivers on the best ways to collect patient-reported data.

“Our hope is that this study can start delivering answers that reflect the needs of the LGS community,” said Dr. Lam.

Dr. Lam and her team expect to publish study results in early 2026.

 

Are you interested in leveraging the PCORnet infrastructure to power your next rare disease research effort? With a new PCORI funding opportunity coming soon, now is the time to reach out. PCORnet is a national resource open to all, regardless of research affiliation or funding source. Visit the PCORnet® Front Door to get started.

Have You Ever Wondered What Kind of Research PCORnet® Can Power?

Posted on by Jodi Snare

Join our upcoming Best Practice Sharing Sessions to get inspired! On March 19 at 12:00 p.m. ET, we’ll explore the operational strategies and lessons learned from ACTIV-6, a PCORnet® Study.

ACTIV-6 was a decentralized platform trial that leveraged the PCORnet infrastructure to study repurposed medications for treating acute COVID-19. The study team recently shared results on medRxiv, a pre-publication server. Guest speakers Rhonda Wilder, project leader, and Martin Oyelakin, lead clinical research associate, will discuss how the study implemented innovative research approaches to accelerate discovery.

What Are Best Practice Sharing Sessions?

These monthly forums bring together researchers, clinicians and community members to exchange ideas, improve methods, and explore new ways of using the PCORnet infrastructure to advance health research. The sessions are open to the public, and we welcome anyone interested in using the PCORnet infrastructure for research.

Want to attend? Email [email protected] for an invite!

Two Recent Data Reports Show that PCORnet® May Potentially Power Impactful Research into Mental and Behavioral Health and Pediatric Populations

Posted on by Jodi Snare

Two recent data reports are providing researchers and the public with insights into the PCORnet® infrastructure. These reports offer topic-specific snapshots of the extensive, real-world patient data available through PCORnet® Clinical Research Networks (CRNs), helping research teams to refine research questions, identify relevant data elements, and design more informed, impactful studies.

Mental and Behavioral Health

The Mental and Behavioral Health Data Report demonstrates that PCORnet has the potential to support national-scale patient-centered comparative clinical effectiveness research (CER) efforts and generate real-world evidence to improve our understanding of the effectiveness of interventions for mental and behavioral health conditions.

This report presents aggregate data on patients with recorded diagnosis codes for mental and behavioral health conditions, as well as the demographic characteristics, healthcare use, and prescribing of common psychiatric medications for these patients. Data from 59 sites participating in PCORnet are included in this report, reflecting the experience of nearly 29.5 million patients.

Read the Mental and Behavioral Health Data Report.

Pediatric Population

A Pediatric Population Data Report is also available. This report demonstrates the magnitude of pediatric patients that are currently connected to sites participating in PCORnet that may be available for future research activities.

The Pediatric Population Data Report describes the sociodemographic and clinical characteristics of more than 12 million pediatric patients from birth to 20 years old who received care in 2023 at a site participating in PCORnet.

Read the Pediatric Population Data Report.

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

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.

A New Year, a New Era of Patient-Centered Health Research Powered by PCORnet®

Posted on by Jodi Snare

In December 2024, the Patient-Centered Outcomes Research Institute (PCORI) approved $134 million in funding for Phase 4 of PCORnet, reaffirming its commitment to advancing patient-centered comparative clinical effectiveness research (CER). This new funding will drive innovative developments, expanding the PCORnet infrastructure to support large-scale, transformative research.

What’s Coming in 2025

The PCORnet® Playbook: A Guide to Research Success

One of the most anticipated initiatives for Phase 4 is the release of the PCORnet® Playbook, a comprehensive resource designed to help researchers make the most of the PCORnet infrastructure. Whether you are funded by PCORI or another source, this guide will provide practical tools, best practices, strategies to navigate the PCORnet infrastructure and integrate patient perspectives. The Playbook will streamline the research process and accelerate discovery, helping researchers hit the ground running. Look for it in early 2025.

Interactive Data Reports: Dynamic Insights at Your Fingertips

In 2025, PCORnet will launch interactive data reports, making data insights from participating sites more accessible and user-friendly. These reports will offer dynamic, interactive tools to explore data by health condition, demographics, and more. Researchers, policymakers, and other partners will find these new tools invaluable for refining research questions, designing impactful studies, and assessing the capabilities of the PCORnet infrastructure to support upcoming research. Expect the initial reports to be available in the first quarter of 2025.

Expanding the PCORnet Infrastructure

The PCORnet infrastructure has grown into a robust, national resource supporting hundreds of studies across designs and funders. With Phase 4 funding, PCORnet will expand further, adding new participating sites and increasing capacity to support large-scale, patient-centered research. This phase will continue to prioritize patient involvement all stages of PCORnet® Studies, ensuring real-life experiences shape every step of the process.

A Transformative Year Ahead

2025 promises to be a transformative year for patient-centered health research. With the launch of the PCORnet® Playbook, new interactive data reports, and an expanded network, PCORnet is poised to empower researchers and deliver results that improve health and change lives.

Interested in how the PCORnet infrastructure can support your patient-centered health research study? Reach out to the PCORnet® Front Door today to start the conversation and explore opportunities to collaborate.

PCORI Approves $134 Million to Bolster the Infrastructure of PCORnet®

Posted on by Jodi Snare

The Patient-Centered Outcomes Research Institute (PCORI) recently approved $134 million for a fourth phase of funding for PCORnet®. This funding will provide continued support for eight PCORnet® Clinical Research Networks (CRNs) and the Coordinating Center for PCORnet®, demonstrating PCORI’s continued commitment to strengthening patient-centered comparative clinical effectiveness research (CER) through this powerful national resource.

Funding from PCORI will be used for several initiatives to sustain, expand, and innovate the PCORnet infrastructure to enhance data quality and research capacity to support multi-site CER studies that meaningfully improve the lives of patients. Read the full media release.