STEP BY STEP GUIDE TO SET 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. The analysis and understanding of this global/national/regional reality would benefit from the data of the renal registries. 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 subgroup of greater severity. A Kidney Replacement Therapy Registry (KRTR) is defined as a systematic and continuous collection of a population-based dataset of ESKD patients treated by dialysis/kidney transplant. The lack of available data, particularly in emerging economies, leaves information gaps on health care and outcomes in these patients. The heterogeneity/absence of KRTR in some countries is consistent with the inequities in the access to kidney replacement therapy (KRT) all over the world. In 2014, The Pan American Health Organization (PAHO) proposed to achieve at least a prevalence of KRT patients of 700 pmp by 2019 in every Latin American (LA) country. Since then, PAHO and SLANH (Sociedad Latino Americana de Nefrología e Hipertensión) lead courses of training and certification of KRTR in Latin America. The purpose of this manuscript is to provide guidance on how to set-up a new KRTR in countries or regions still lacking one. Advice is provided on the sequence of steps to setup a KRTR, personnel requirements, dataset content and minimum quality indicators required.