Step-by-step guide to setting up a kidney replacement therapy registry: the challenge of a national kidney replacement therapy registry
File(s)Registry guide.pdf (399.76 KB)
Published version
Author(s)
Rosa-Diez, Guillermo
González-Bedat, María Carlota
Luxardo, Rosario
Ceretta, María Laura
Ferreiro-Fuentes, Alejandro
Type
Journal Article
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.
Date Issued
2021-07
Date Acceptance
2021-01-11
Citation
Clinical Kidney Journal, 2021, 14 (7), pp.1731-1737
ISSN
2048-8513
Publisher
Oxford University Press
Start Page
1731
End Page
1737
Journal / Book Title
Clinical Kidney Journal
Volume
14
Issue
7
Copyright Statement
© The Author(s) 2021. Published by Oxford University Press on behalf of ERA-EDTA.
This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/
licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
For commercial re-use, please contact journals.permissions@oup.com
This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/
licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
For commercial re-use, please contact journals.permissions@oup.com
License URL
Identifier
http://dx.doi.org/10.1093/ckj/sfab015
Publication Status
Published
Date Publish Online
2021-01-24