Development of a prospective data registry system for retrograde intrarenal surgery in renal stones: Turkish Academy of Urology Prospective Study Group (ACUP study)

Abstract

Objective: We aimed to report the development of a prospective data registry by generating a retrograde intrarenal surgery (RIRS)-specific electronic case report form (eCRF), which can be used by multiple centers in Turkey. Material and methods:The Stone Disease Study Group of Turkish Urology Academy developed a template for the necessary data to be collected, which was then implemented within a dedicated server. Urologists from different universities, research and training centers, and private hospitals were invited to participate in this data registry. Each urologist was provided with a unique username and password after they agreed to participate in the study. Results:In March 2015, the development of the eCRF was completed, and the server was opened for data input in April 2015. We started a prospective clinical data registry for all patients undergoing RIRS for renal stone(s) in 15 participating hospitals. Until the end of June 2016, 1112 RIRSs on 1264 patients have been included in the dataset. Conclusion:The easy-to-use eCRF specifically developed for RIRS was first of its kind in Turkey. This prospective data registry harvests important data that will be used to identify real-world demographic, clinical and operative data of patients with renal stone who undergo RIRS in various urology departments throughout Turkey. The results of this dataset will be presented in various papers.

Design and Implementation of a Web-Based Self-Care Application for Patients with Kidney Stone Treated with Extracorporeal Shock Wave Lithotripsy

“…Akand et al [31] conducted a study to develop the RIRS information registry system for patients with kidney stones in Turkey in 2019. They extracted and categorized the information into three sections before operation, during operation and postoperative.…”

Design and development of a web-based registry for Coronavirus (COVID-19) disease

“…Clinical registries allow ongoing monitoring and benchmarking of clinical management and treatment outcomes, and thus are considered among the most effective strategies for quality healthcare improvement. They are powerful and comprehensive tools for conducting research and detecting eligible subjects to contribute in a particular study or clinical trial (5,(36)(37)(38). COVID-19 registry has been developed on the web platform enabling scientific teamwork in the field of COVID-19 and purposes to achieve a collaborative multi setting research study with a flexible registry structure.…”