Rationale and Design of the Registry for Stones of the Kidney and Ureter (ReSKU™): A Prospective, Observational Registry to Study the Natural History of Urolithiasis Patients: Beyond the Abstract
Recently, we have designed and implemented Registry for Stones of the Kidney and Ureter (ReSKU™). This is a longitudinal, observational, prospective registry of patients with urinary stone disease, and ties to an electronic health record (EHR). Inpatient and outpatient data in all phases of care are extracted from the EHR prospectively in an automated fashion and then organized in a Research Electronic Data Capture (REDCap) database which is a secure, web-based application portal designed to support data capture for research studies. All data collection instruments were designed based on current stone management guidelines, quality care metrics, and endourologist interviews to identify the data points that any provider should be asking patients at each clinic visit.
By integrating 4 data collection instruments within ReSKU™ (New Patient, Surgery, Postoperative Follow-up, and Follow-up) into provider clinic note templates, provider documentation for the clinical encounter becomes the portal by which the registry is populated. To demonstrate its impact on the amount of time a provider would invest into using a registry, we compared different models of data entry. Using conventional registry data population (i.e. a research assistant abstracting data from the provider’s clinical note into ReSKU™), manual data entry into REDCap required up to 12 additional minutes for each data collection instrument. With full EHR integration in ReSKU™, however, no manual data entry time was required. Thus, ReSKU™ is able to capture real world practice in urinary stone management with essentially little to no impact on provider documentation time.
While ReSKU™ has several advantages over traditional registries, some challenges exist. An upfront investment is required to implement automated data extraction. Long-term data collection may also be limited by patients lost to follow-up. These are inherent limitations given ReSKU™’s infrastructure and reflect the nature of registry studies in general.
As a longitudinal, observational, prospective registry of patients with urinary stone disease that automates data extraction from EHRs, ReSKU™ represents an evolution from traditional registries. It provides a research and outcomes monitoring infrastructure that minimizes the burdens of quality metric reporting and removes many of the barriers to performing high quality clinical research for urolithiasis.
Written by: David T Tzou, Manint Usawachintachit, and Thomas Chi
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