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. 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.

The Latin American Dialysis and Renal Transplantation Registry: report 2019

“…During 2013 the Pan-American Health Organization (PAHO) developed a strategic plan called ‘In favor of health: sustainable development and equity’ that proposed to increase access to interventions to prevent and control the noncommunicable diseases and their risk factors. In collaboration with the SLANH, which is a non-governmental organization collaborating with the PAHO since 2015, the goal proposed was to achieve universal coverage of KRT and a prevalence rate of at least 700 pmp by 2019 [ 16 ]. In order to make this goal feasible, the plan also proposed to increase the use of PD as a cost-effective KRT modality (20% use was suggested) and to reach a rate of 20 nephrologists pmp to provide adequate care for patients with CKD.…”

“…Currently the LADRTR is composed of an executive board and delegates from each of the nephrology societies from the 20 countries that are members of the Latin American Society of Nephrology and Hypertension (SLANH). By 2019, eight countries were classified as registry category 1, meaning that there is not yet a basic type of dialysis and/or kidney transplant systematic registry [ 16 ]. Two countries were category 5, meaning that the registration of dialysis and transplantation is national in scope, with >90% of the patients registered.…”

Cuatro décadas de tratamiento de diálisis crónica en Uruguay

“…En el año 2020, la mortalidad no ajustada fue de 16.6/100 pac-año, lo que significa un descenso del 2% respecto al año 2019 (Tabla 3). En Latinoamérica (LA), en 2019 la mortalidad promedio de la región fue 13.0/100 pac-año, con una variabilidad que va desde 4/100 pac-año en Nicaragua a 25/100 pac-año en Honduras 10 . A su vez, la mortalidad bruta de los pacientes en DC en EE.UU.…”

Futuro de la nefrología en Latinoamérica, asignaturas pendientes pospandemia COVID-19

“…Un aspecto relevante para destacar es que buena parte de la información disponible está basada en datos obtenidos de registros de ERC y/o de tratamiento renal sustitutivo (TRS), que se han desarrollado en los países de la región de manera dispar a lo largo del tiempo, pero con un impulso destacado en la última década 2 .…”