From designing minimum data set to developing kidney transplantation registry in Iran

Abstract

Objective: Currently, population growth and increasing life expectancy are becoming one of the biggest public health challenges in the world, which has increased the prevalence of chronic diseases such as end-stage renal disease and the need for kidney transplantation. The use of a variety of registries has the potential to determine the effectiveness of clinical care and costs and improve the quality of patient care. The aim of this study is to design minimum data set to develop a kidney transplantation registry in Iran to improve the quality of care for people with end-stage renal disease. Methods: The present research is descriptive-applied. The minimum data set was reviewed and evaluated in expert panel meetings. The various elements of the minimum data set were discussed, and specialists in urology, nephrology, health information management, and medical informatics presented their views. Results: The characteristics of the kidney transplantation registry in the form of eight axes of purpose, structure, data sources, minimum data set, classification systems, data processing and reporting, distribution and access to information, and data quality were extracted and finally these characteristics were approved by experts. The relevant tables were validated and were within the acceptable range from the point of view of experts. Conclusion: In developing a kidney transplantation registry in Iran, the necessary requirements and features for designing a web-based registry have been considered. The prototype of this registry in the country will help to collect higher quality data. It is hoped that by developing this registry, a step will be taken to better manage the information on people with end-stage renal disease, provide better services to these patients, and facilitate related research.