Kidney Int. 2021 Nov 1:S0085-2538(21)01020-6. doi: 10.1016/j.kint.2021.09.024. Online ahead of print.
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 analysed in isolated “silos”, hampering efforts to analyse “big data” at the international level, with 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 and 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 under-representation 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 harmonise the current fragmented approaches to kidney failure registry data collection and research.
PMID:34736973 | DOI:10.1016/j.kint.2021.09.024
