Presented by: Wilson Sui MD
University of California San Francisco

Introduction

High-quality data on long-term outcomes is essential for advancing our understanding of stone disease, but much of stone research exists in silos. Prior attempts at stone registries have relied on inefficient, manual data entry with limitations in reliability. The Registry for Stones of the Kidney and Ureter (ReSKU) is an automated electronic health record (EHR)-based longitudinal registry of patients with stone disease initially developed and implemented at our institution. Herein we describe our early experience with multi-institution implementation.

Materials

Prospectively identified demographic, intraoperative, and perioperative variables were incorporated into standardized data collection instruments reflecting new patient encounters, surgery specific measures, post-operative outcomes and longitudinal follow up data. Automated data extraction into a HIPAA-complaint database was performed from the EHR. The registry infrastructure was disseminated to other high volume stone centers for technical build and implementation with data sharing capabilities. Initial data from completed builds were integrated in an automated fashion.   

Results

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17 medical centers across the United States (US), Canada, and China are in various phases of implementation of ReSKU, with 4 centers (3 USA, 1 China) having functioning builds with data sharing capabilities. Across these four institutions, 7439 patients have been recruited as of 2022. Patients at US institutions had significantly different body mass index and rates of symptomatic presentations than patients at the Chinese institution. The Chinese institution had patients with larger mean cumulative stone burden (32.7 mm vs 18.9 mm, p<0.001) and had a greater rate of percutaneous nephrolithotomy (PCNL) for surgical management (61% vs 22%, p<0.001) compared to the US institutions (Table 1). Patients undergoing 24-hour urine testing at US institutions also displayed significant differences in urinary calcium and uric acid compared to those at the Chinese institution (Table 1). 

Conclusion

The Registry for Stones of the Kidney and Ureter is a growing multi-institutional registry with infrastructure supporting automated data extraction at a single institution and data integration across institutions. Further development and expansion of this resource will facilitate multi-institutional, high impact stone research.

Funding

NA

Lead Authors

Kevin Chang, BA
University of California San Francisco

Co-Authors

Ian Metzler, MD
Oregon Health & Science University

Brian Duty, MD, MBA
Oregon Health & Science University

Roger L. Sur, MD
UCSD

Heiko Yang, MD
UCSF

Michelle Li, BS
UCSF

Catherine Arevalo, BA
UCSF

David Bayne, MD, MPH
UCSF

Justin Ahn, MD
UCSF

Marshall Stoller, MD
UCSF

Tom Chi, MD
UCSF