A global evaluation of data monitoring systems and early identification for kidney diseases

Georgina Irish*, Fergus J Caskey, M Razeen Davids, Marcello Tonelli, Chih Wei Yang, Silvia Arruebo, et al

*Corresponding author for this work

Research output: Contribution to journalArticle (Academic Journal)peer-review

Abstract

Background:
Data monitoring and surveillance systems are the cornerstone for governance and regulation, planning, and policy development for chronic disease care. Our study aims to evaluate health systems capacity for data monitoring and surveillance for kidney care.

Method:
We leveraged data from the third iteration of the International Society of Nephrology Global Kidney Health Atlas (ISN-GKHA), an international survey of stakeholders (clinicians, policymakers, and patient advocates) from 167 countries and conducted between July and September 2022. ISN-GKHA data on availability and types of kidney registries, the spectrum of their coverage, as well as data on national policies for kidney disease identification.

Results:
Overall, 167 countries responded to the survey, representing 97.4% of the global population. Information systems in forms of registries for dialysis care were available in 63% (n=102) of countries, followed by kidney transplant registries (58%; n=94), registries for non-dialysis chronic kidney disease (19%; n=31), and acute kidney injury (9%; n=14). Participation in dialysis registries was mandatory in 57% (n=58) of countries; however, in more than half of countries in Africa (58%; n=7), Eastern and Central Europe (67%; n=10), and South Asia (100%; n=2), participation was voluntary. The least reported performance measures in dialysis registries were hospitalization (36%; n=37) and quality of life (24%; n=24).

Conclusions:
The variability of health information systems and early identification systems for kidney disease across countries and world regions warrants a global framework for prioritizing the development of these systems.
Original languageEnglish
JournalNephrology Dialysis Transplantation
Publication statusAccepted/In press - 9 Apr 2024

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