PCORnet® Resources are Powering Nephrology Research for Children and Adults
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®).
September 2025
THE PCORnet® INFRASTRUCTURE SOLVES KEY CHALLENGES IN NEPHROLOGY RESEARCH
Challenge: Underpowered trials
Challenge: High participant nonadherence
Challenge: Irrelevant study outcomes
Solution: Real-world data from everyday healthcare encounters with more than 47 million people annually across the U.S.
Solution: Proven, low-burden models for pragmatic research
Solution: Patient input integrated across the study lifecycle
CASE STUDIES: NEPHROLOGY RESEARCH POWERED BY PCORnet®
Evaluating Comparative Effectiveness of Empagliflozin in Type 2 Diabetes Population With and Without Chronic Kidney Disease (Empa DKD)
Design: Retrospective Observational
Funder: Boehringer Ingelheim
Principal Investigator: Neha Pagidipati, Duke Clinical Research Institute
Study questions:
- Why aren’t patients with type 2 diabetes receiving guideline-recommended screening for diabetic kidney disease (DKD)?
- Which medications are safest and most effective for patients with type 2 diabetes, with or without chronic kidney disease (CKD)?
Methods:
- Used PCORnet to partner with 20 large healthcare systems
- Included 62,197 adults with type 2 diabetes with or without kidney disease
Results:
- Published results in JAMA Network Open revealing CKD screening gaps and potential improvement strategies
- Published results in the Journal of the American College of Cardiology and The American Journal of Cardiology comparing medication effectiveness for kidney and heart outcomes in patients with type 2 diabetes
“PCORnet resources offer the only networked datasets out there that could support this research.”
Neha Pagidipati, Principal Investigator of the Empa DKD and IRIS-CKD studies
Pediatric KIDney Stone (PKIDS) Care Improvement Network
Design: Prospective Observational
Funder: Patient-Centered Outcomes Research Institute® (PCORI®)
Principal Investigator: Gregory Tasian, The Children's Hospital of Philadelphia
Study question: What are the differences in stone clearance and the lived experiences of youth following ureteroscopy, shock wave lithotripsy, and percutaneous nephrolithotomy for the removal of kidney and ureteral stones?
Methods:
- Collaborated with 23 pediatric healthcare systems participating in PCORnet
- Included 1,290 youth (ages 8–21) receiving kidney stone surgery
- Co-designed with patients, caregivers, surgeons, and health systems
- Published a design paper with a pragmatic research framework for pediatric nephrology
Preserving Kidney Function in Children with Chronic Kidney Disease (PRESERVE)
Design: Retrospective Observational
Funder: Patient-Centered Outcomes Research Institute® (PCORI®)
Principal Investigator: Christopher Forrest, The Children’s Hospital of Philadelphia
Study questions:
- Which monitoring strategies and blood pressure medications best preserve kidney function in pediatric patients with CKD?
- What are the lived experiences of families and patients managing pediatric CKD?
Methods:
- Partnered with 15 healthcare institutions participating in PCORnet that provide pediatric clinical care services
- Included 20,100 children (ages 1–17) with CKD seen between Jan. 2009-Dec. 2021
- Engaged parent partners to assess lived experiences managing blood pressure
- Expanded the PCORnet® Common Data Model for pediatric and rare kidney disease research
ONGOING NEPHROLOGY STUDIES POWERED BY PCORnet®
Choosing Immune Suppression in Renal Transplantation by Efficacy and Morbidity (CISTEM2)
USDHub: Community Resource for Urinary Stone Disease Research
Implementation pRogram to Improve Screening and management for CKD in Diabetes (IRIS-CKD)
PREvention of CardIovascular and DiabEtic kidNey disease in Type 2 Diabetes (PRECIDENTD)
POWER YOUR NEPHROLOGY RESEARCH WITH PCORnet®
PCORnet resources are available to researchers, patient groups, industry, and agencies from all funding sources and affiliations. PCORI also offers funding for broad pragmatic studies using PCORnet.
Are you ready to find out how PCORnet can support your next research effort? Contact the PCORnet® Front Door to start the conversation.
PCORnet is a national resource, funded by PCORI, that enables insights from high-quality health data, patient partnership, and research expertise to deliver fast, trustworthy answers that advance health outcomes. The network supports both observational and interventional research.