National and international kidney failure registries: characteristics, commonalities, and contrasts

Ng, Monica S.Y., Charu, Vivek, Johnson, David W., O’Shaughnessy, Michelle M., and Mallett, Andrew (2022) National and international kidney failure registries: characteristics, commonalities, and contrasts. Kidney International, 101 (1). pp. 23-35.

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Abstract

Registries are essential for health infrastructure planning, benchmarking, continuous quality improvement, hypothesis generation, and real-world trials. To date, data from these registries have predominantly been analyzed in isolated “silos,” hampering efforts to analyze “big data” at the international level, an approach that provides wide-ranging benefits, including enhanced statistical power, an ability to conduct international comparisons, and greater capacity to study rare diseases. This review serves as a valuable resource to clinicians, researchers, and policymakers, by comprehensively describing kidney failure registries active in 2021, before proposing approaches for inter-registry research under current conditions, as well as solutions to enhance global capacity for data collaboration. We identified 79 kidney-failure registries spanning 77 countries worldwide. International Society of Nephrology exemplar initiatives, including the Global Kidney Health Atlas and Sharing Expertise to support the set-up of Renal Registries (SharE-RR), continue to raise awareness regarding international healthcare disparities and support the development of universal kidney-disease registries. Current barriers to inter-registry collaboration include underrepresentation of lower-income countries, poor syntactic and semantic interoperability, absence of clear consensus guidelines for healthcare data sharing, and limited researcher incentives. This review represents a call to action for international stakeholders to enact systemic change that will harmonize the current fragmented approaches to kidney-failure registry data collection and research.

Item ID: 73363
Item Type: Article (Research - C1)
ISSN: 1523-1755
Keywords: data sharing, dialysis, inter-registry collaboration, kidney failure, registry, transplantation
Copyright Information: Copyright © 2021, International Society of Nephrology. Published by Elsevier Inc. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
Date Deposited: 07 Jun 2022 01:59
FoR Codes: 32 BIOMEDICAL AND CLINICAL SCIENCES > 3202 Clinical sciences > 320214 Nephrology and urology @ 100%
SEO Codes: 20 HEALTH > 2001 Clinical health > 200199 Clinical health not elsewhere classified @ 50%
20 HEALTH > 2001 Clinical health > 200105 Treatment of human diseases and conditions @ 50%
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