Featured In This Issue
- Autism Acceptance Month Spotlight: From PCORnet Data Reports to Patient-Centered Research Results
- New Brief: PCORnet Resources are Powering Nephrology Research for Children and Adults
- PCORnet® Study: Addressing the Complexities of Rare Disease Research in Lennox-Gastaut Syndrome
Funding Opportunities: Share the Latest Funding Announcements with Your Network of Researchers
Upcoming Events: Explore Learning Opportunities and Strengthen Your Research
Research Results: Read the Latest Published Insights from Studies Powered by PCORnet®
A National Health & Research Data Resource for Patient-Centered Comparative Clinical Effectiveness Research
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Autism Acceptance Month Spotlight: From PCORnet Data Reports to Patient-Centered Research Results
In honor of Autism Acceptance Month, Brittney Manning, director of Research and Operations for OneFlorida+, shares her personal journey with her son's autism diagnosis and why resources like the PCORnet data report on intellectual and developmental disabilities (IDD) are so important.
To gain insights on healthcare for people living with these conditions, the Patient-Centered Outcomes Research Institute® (PCORI®) recently announced a funding opportunity for research related to people with IDD, with special emphasis on oral health, gastrointestinal health, and improving care delivery.
New Brief: PCORnet Resources are Powering Nephrology Research for Children and Adults
Check out our new brief showcasing the ways study teams are leveraging the PCORnet infrastructure to solve key challenges in nephrology research. One study, Empa DKD, partnered with 20 large healthcare institutions across PCORnet® Clinical Research Networks to analyze electronic health record data from more than 62,000 patients. The study’s findings offer important insights that could be used to improve screening and treatment for chronic kidney disease in people with type 2 diabetes.
With more than 35.5 million people in the U.S. affected by conditions that impact kidney function, real-world insights are critical to improving treatments and producing outcomes that are meaningful to patients and caregivers. The brief emphasizes how the PCORnet infrastructure enables robust comparative clinical effectiveness research that patients and clinicians can use to make more informed healthcare decisions.
PCORnet® Study Spotlight: Addressing the Complexities of Rare Disease Research in Lennox-Gastaut Syndrome
Lennox-Gastaut Syndrome (LGS), a rare and severe form of epilepsy that begins in early childhood, presents unique challenges for researchers due to its low prevalence and clinical variability. Using the PCORnet infrastructure, researchers can leverage real-world data from more than 47 million people across the US to conduct comparative clinical effectiveness research on rare diseases like LGS. One PCORnet® Study team is using network resources to explore the health records of thousands of patients with LGS. Their goal: to evaluate whether additional medications or surgical interventions are more effective in improving the outcomes that matter to children with LGS and their caregivers.
The Letter of Intent (LOI) submission deadline for open funding opportunities is quickly approaching—now is the time to connect with the PCORnet® Front Door! If you're planning to leverage the network for your study proposal, don’t delay in reaching out for support.
Now Available: PCORI Broad Pragmatic Studies (BPS) Category 3 Funding Opportunity
PCORI is currently offering a Category 3 BPS funding opportunity for researchers aiming to use PCORnet resources to conduct patient-centered comparative clinical effectiveness research (CER). PCORnet® Studies under this category use the network to conduct observational studies and pragmatic trials that are national in scale. Category 3 PCORnet Studies® must include two or more PCORnet® Clinical Research Networks and share study progress, performance metrics, and best practices to foster continuous learning and improvement.
- LOI Deadline for Cycle 2: May 13, 2025
- Learn more
Additional PCORI funding opportunities with an LOI deadline of May 13 are available. Be sure to review all open calls and consider how PCORnet can support your research goals.
Explore these learning opportunities to strengthen your research and get inspired by studies leveraging the PCORnet infrastructure.
Discover where PCORnet® Network Partners are presenting and how you can learn more about their innovative approach to patient-centered research.
WEBINAR
Upcoming Best Practice Sharing Session features a Congenital Heart Initiative study
- Hear from the PCORnet® Study “CHI-RON: Congenital Heart Initiative: Redefining Outcomes and Navigation to Adult-Centered Care,” including lessons learned for building a patient-centered, comparative effectiveness infrastructure for rare disease by linking registry, electronic health record, and health insurance claims data across twelve PCORnet institutions.
- When: May 22 at 2 pm (ET)
- Contact [email protected] for a calendar invite
SCIENTIFIC CONFERENCES
Society for Clinical Trials (SCT) 46th Annual Meeting
- When: May 18-21, Vancouver, British Columbia, Canada
- Join Roundtable 22, Monday, May 19 for "How to Power your Comparative Effectiveness Research with PCORnet®"
AcademyHealth 2025 Annual Research Meeting
- When: June 7-10, Minneapolis, MN
- Date: Sunday, June 8
- Time: 12:45 - 2 pm (CT)
- Workshop: PCORnet 101: A National Resource for Patient-Centered Health Research
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- Date: Monday, June 9
- Time: 9:30 - 10:45 am (CT)
- Panel: PCORnet: Patients Guiding Network Governance and Research Execution
The Latest Published Insights from Studies Powered by PCORnet®
Explore recently published findings from research teams leveraging the PCORnet infrastructure:
Identifying Patients at Risk for Cardiometabolic and Chronic Diseases by Using the Exercise Vital Sign to Screen for Physical Inactivity
Funder: Stead Family Children’s Hospital at the University of Iowa
FHIR PIT: A Geospatial and Spatiotemporal Data Integration Pipeline to Support Subject-level Clinical Research
Funder: National Institutes of Health
A Digital Health Behavior Intervention to Prevent Childhood Obesity: The Greenlight Plus Randomized Clinical Trial
Funder: PCORI®
Interested in how the PCORnet infrastructure can support your research? Reach out to the PCORnet® Front Door—the access point for PCORnet resources, expertise, and collaborative research opportunities.
PCORnet® is intended to improve the nation’s capacity to efficiently conduct patient-centered health research, particularly comparative clinical effectiveness research (CER), by providing a large, highly representative network of health data, research expertise, and patient insights. PCORnet® has been developed with funding from the Patient-Centered Outcomes Research Institute (PCORI®).