Establishing the Kidney dIsease in the National guarD (KIND) registry: an opportunity for epidemiological and clinical research in Saudi Arabia

Abstract

Abstract Background In Saudi Arabia (SA), there has been an alarming increase in the prevalence of chronic kidney diseases (CKD) over the last three decades. Despite being one of the largest countries in the Middle East, renal conditions remain understudied, and there is limited data on their epidemiology and outcomes in SA. Objectives To document the experience of establishing a local renal registry assessing the epidemiology of CKD and identifying potential areas for improving the quality and delivery of care for CKD patients. Methods This is a multi-center retrospective registry. Potential participants were identified through the ICD-10 codes from five hospitals serving the National Guard affiliates in SA. Patients aged ≥ 18 years treated in any National Guard hospital since 2010 for glomerulonephritis, CKD, or received hemodialysis, peritoneal dialysis, or renal transplant were enrolled. Once enrolled in the registry, patients were followed to the last visit date. RedCap was used to create and host the online registry platform. Results A total of 2,912 patients were included, and more than half were younger than 60 years old. Two-thirds of the patients were overweight (25%) or obese (37%). Glomerulonephritis was diagnosed in 10% of the patients, and dialysis-dependent and kidney transplant patients accounted for 31.4% and 24.4%, respectively. Hypertension and diabetes mellitus were detected among 52% and 43% of the participants, respectively. Hemodialysis was the most prevalent dialysis method, with patients spending 3.6 ± 0.4 h per session to receive this treatment. One in every five participants had a kidney biopsy taken (21%). Several barriers and facilitators of the success of this registry were identified. Conclusions The KIND registry provides much-needed information about CKD in Saudi Arabia and serves as a model for future projects investigating the natural history and progression of the spectrum of renal diseases. Logistic and financial challenges to the sustainability of registries are identified and discussed.