Step-by-step guide to setting up a kidney replacement therapy registry: the challenge of a national kidney replacement therapy registry

Abstract

Chronic kidney disease (CKD) has become one of the most important public health problems worldwide. Analysis, and understanding, of this global/national/regional reality would benefit from renal registry databases. The implementation of a CKD registry (including all categories) is difficult to achieve, given its high cost. On the other hand, patients with end-stage kidney disease (ESKD) are easily accessible and constitute the most severe subgroup in terms of comorbidities and healthcare costs. A kidney replacement therapy registry (KRTR) is defined as the systematic and continuous collection of a population-based data set from ESKD patients treated by dialysis/kidney transplant. The lack of available data, particularly in emerging economies, leaves information gaps on healthcare and outcomes in these patients. The heterogeneity/absence of a KRTR in some countries is consistent with the inequities in access to KRT worldwide. In 2014, the Pan American Health Organization (PAHO) proposed to determine the prevalence of patients on dialysis for at least 700 patients per million inhabitants by 2019 in every Latin American (LA) country. Since then, PAHO and the Sociedad LatinoAmericana de Nefrología e Hipertensión have provided training courses and certification of KRTR in LA. The purpose of this manuscript is to provide guidance on how to set up a new KRTR in countries or regions that still lack one. Advice is provided on the sequential steps in the process of setting up a KRTR, personnel requirements, data set content and minimum quality indicators required.