Featured In This Issue
- Findings From the Pediatric KIDney Stone (PKIDS) Trial, a PCORnet® Study, Help Inform Pediatric Kidney Stone Surgery
- PCORnet® Studies Demonstrate Meaningful Patient and Partner Engagement
- New PCORnet® Population Insights on Cancer and Menopause Among Reports Characterizing Conditions and Treatments for More Than 50 Million Patients Across the U.S.
- Learn How Investigators Are Leveraging the Infrastructure of PCORnet® to Overcome Longstanding Challenges in Rare Disease Research
Funding Opportunities: Read below for newly released PCORI® Funding Announcements in methods, engagement, and broad pragmatic studies, and share with your network of researchers.
- Join us in September for Participant Recruitment and Outcomes Data Collection in PCORnet® Study RESTORE: a Large, Multisite Pragmatic Clinical Trial
- Register today for the 2026 PCORI Annual Meeting on Oct. 19 and 20.
Research Results: Follow PCORnetwork(opens in new tab) on LinkedIn for updates on new publications from more than 300 studies. Explore newly published results on chronic kidney disease, heart failure, hepatitis and more and connect with peers engaged with the network.
PCORnet® Study Helps Inform Pediatric Kidney Stone Surgery
Findings from the Pediatric KIDney Stone (PKIDS) trial, a PCORI-funded PCORnet® Study conducted by the PKIDS Care Improvement Network, are providing evidence to help inform surgical treatment decisions for children and adolescents with kidney stones. The prospective observational study compared three common procedures for the removal of kidney and ureteral stones – ureteroscopy, shock wave lithotripsy, and percutaneous nephrolithotomy – to evaluate stone clearance and recovery time. The PKIDS research team consulted with engagement experts from PEDSnet, a PCORnet® Clinical Research Network, and PCORI, who provided important insights that helped the team move beyond asking for feedback at isolated points and instead embed Patient and Family Partners to improve the design and implementation of the study.
PCORnet® Studies Demonstrate Meaningful Patient and Partner Engagement
Two PCORnet® Studies are highlighting how meaningful engagement of patients and other partners can strengthen research. CHI-RON, a PCORnet® Study that examined the effects of gaps in recommended care for individuals with adult congenital heart disease, included patients as co-investigators and engaged patient partners in study design, recruitment, community outreach, and social media. Building a patient-centered research team helped the study overcome recruitment challenges and allowed patient partners to make meaningful contributions at every study stage. The PCORnet® Study, PRECIDENTD – an intervention trial – includes patient and partner representatives on its executive committee and advisory council, where they help inform study design, messaging, participant materials, and more. In PRECIDENTD, patient input helped the study team understand the challenges patients face and how to address them to ensure a successful trial. Together, these studies demonstrate how researchers can leverage the research-ready community and expertise within PCORnet to deepen engagement efforts. Both studies are featured in the recent Medical Care (opens in new tab) supplement, “PCORnet®: Accelerating Patient-Centered Comparative Clinical Effectiveness Research.”
PCORnet® Resources Highlight Advances In Rare Disease Research
Research in rare health conditions has long been challenged by small, geographically dispersed patient populations and limited clinical data. The PCORnet infrastructure can help mitigate these barriers by providing access to standardized, longitudinal clinical data generally not available through existing national surveillance systems. By integrating the lived experience and expertise of community partners throughout the research lifecycle, PCORnet® Studies ensure that outcomes are meaningful and actionable for patients, caregivers and the broader healthcare community. In a PCORnet® Study on Lennox–Gastaut Syndrome (LGS), the research team chose outcomes that aligned with what caregivers identified as most important – emergency medical care for seizures and patients’ functional outcomes. A new research highlight features the LGS study and other case studies that demonstrate how PCORnet resources enable investigators to conduct impactful, patient-centered health research across a range of rare conditions.
New PCORnet® Population Insights on Cancer and Menopause Among Reports Characterizing Conditions and Treatments for More Than 50 Million Patients Across the U.S.
Two new PCORnet® Population Insights Reports demonstrate the capacity of PCORnet data resources to inform research questions and support participant recruitment in national-scale studies focused on cancer and menopause. The reports include demographic, geographic, and care setting data by condition as well as insights on co-occurring conditions, treatments, medications, and more. The reports are among 11 topic-level reports that characterize the extensive, real-world patient data available through PCORnet. They describe the characteristics of more than 50 million patients receiving care at sites participating in PCORnet across the U.S. and can be used to develop comparative clinical effectiveness and other patient-centered health research studies.
PCORI Funding Opportunities Now Open
PCORI is now accepting Letter of Intent submissions for several PCORI Funding Announcements (PFAs). The Broad Pragmatic Studies(opens in new tab) PFA includes a Category 3 option that will support patient-centered comparative clinical effectiveness research with up to $12 million in direct costs that utilize PCORnet to conduct national-scale observational studies and/or pragmatic trials.
The Improving Methods for Conducting Patient-Centered Comparative Clinical Effectiveness Research (CER) PFA is also open. This PFA seeks to fund studies that address high-impact methodological gaps in patient-centered CER. LOI deadlines for all Cycle 3 2026 PFAs are due Sept. 9.
- Broad Pragmatic Studies(opens in new tab)
- Improving Methods for Conducting Patient-Centered Comparative Clinical Effectiveness Research(opens in new tab)
Additional PFA with LOI due Sept. 9:
- Addressing Substance Use PCORI Funding Announcement(opens in new tab) with an Applicant Town Hall Aug. 18 at 12 pm (ET(opens in new tab))
While PCORI funds many PCORnet® Studies, PCORI funding is not required to qualify as a PCORnet® Study or to leverage the PCORnet infrastructure for your research. Nearly 40% of PCORnet® Studies are funded by industry or large federal organizations such as the NIH.
Explore these learning opportunities to strengthen your research and gain insights from studies utilizing the PCORnet infrastructure.
Best Practices Sharing Session
Join us at the next session in the free monthly webinar series. Contact [email protected] for a calendar invite.
September 24 at 3 pm (ET)
Investigators from the PCORI-funded PCORnet® Study, REducing future fractureS and improving ouTcOmes of fRagility fracturE (RESTORE), will share best practices related to both participant recruitment and outcomes data collection in a large, multisite pragmatic clinical trial. Presenters will include Dr. Kenneth Saag, professor of medicine, Jane Knight Lowe Endowed Chair, and director of the Division of Clinical Immunology and Rheumatology, and Dr. Maria Danila, Endowed Professor in Musculoskeletal Outcomes Research and professor of medicine in the Division of Clinical Immunology and Rheumatology, both of the University of Alabama at Birmingham. Learn more
2026 PCORI® Annual Meeting
Join hundreds of professionals from across the nation at one of the most engaging events in healthcare — the 2026 PCORI Annual Meeting! The event takes place in Washington, D.C. on Oct. 19 and 20. Learn more and register today(opens in new tab)
Listen and Learn
Listen to a conversation about why patients are a virtue in the patient-centered health research of PCORI and PCORnet. Claudia Grossmann, associate director in the Research Data and Technology Unit at PCORI, and Jeff Ordway, patient co-investigator for the Greater Plains Collaborative, a PCORnet® Clinical Research Network, were guests on CTSI Discovery Radio. In the 30-minute podcast episode, they explain the power of the PCORnet infrastructure for engaging patients, caregivers, and other members of the healthcare community at all stages of a research study. Listen today and please share with your colleagues and networks. Listen here
PCORnet® Clinical Research Network (CRN) Site Profiles
PCORnet® CRN Site Profiles provide an overview for each of the 77 partner sites across the eight PCORnet® CRNs. Each profile describes the site’s patient population, recruitment approaches, current study participation, and established links to other types of data such as medical claims. Use these profiles to identify collaborators and plan your studies more efficiently, from proposal through implementation. Learn more
Recently published insights from study teams using the PCORnet infrastructure
Comparative Effectiveness of Antihypertensive Medications in Children With Chronic Kidney Disease(opens in new tab). JAMA Pediatrics, May 2026; Denburg MR, Goodwin Davies AJ, Maltenfort MG, et al. (Funder: PCORI)
Evaluation of PCORnet as an Approach to Accessing Electronic Health Record (EHR) Data for Cleft Outcomes Research: Advantages and Limitations(opens in new tab). Journal of Cleft Palate Craniofac, April 2026; Lin E, Yi VN, Dunworth K, Runyan C, Allori AC. (Funder: N/A)
Heart Failure With Preserved Ejection Fraction Across the Spectrum of Body Mass Index: Hemodynamic and Echocardiographic Characteristics and Outcomes(opens in new tab). JACC Heart Failure, March 2026; Harrington J, Giczewska A, Rao VN, Fudim M. (Funder: PCORI)
Analysis of a PCORnet® database identifies multi-level predictors of delta hepatitis in a U.S. hotspot(opens in new tab). Commun Med, March 2026; Alpert L, Zhang X, Smith R, Lange M, Kushner T. (Funder: DESCRIBE grant from Gilead Sciences, Inc.)
Beyond Missingness: Systematizing Methods for Comprehensive Data Fitness Assessment in Clinical Research(opens in new tab). Journal of Med Internet Res, April 2026. Razzaghi H, Wieand K, Dickinson KL. (Funder: PCORI)
Predictors of ischemic stroke and major bleeding among patients with atrial fibrillation in clinical practice(opens in new tab). Journal of Am Heart, May 2026. Gouda P, Harrington J, Arps K. (Funder: PCORI)
Contact the PCORnet® Front Door
When you’re ready to learn how the PCORnet infrastructure can support your patient-centered health research, connect with the PCORnet® Front Door, your gateway to opportunities.
PCORnet® is on LinkedIn
Follow PCORnetwork(opens in new tab) on LinkedIn to join the conversation, stay connected, and get the latest updates on how the PCORnet infrastructure is improving the nation’s capacity to efficiently conduct patient-centered comparative clinical effectiveness research (CER) through research expertise, patient and community partner insights, and high-quality health data.
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®).