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GREAT CARE FOR LITTLE KIDNEYS. EVERYWHERE.
Understanding the differences in disease burden internationally
Introduction of the IPNA Global RRT Registry
In pediatric nephrology, it is paramount that the incidence, prevalence and outcomes in kidney replacement therapy are systematically monitored. Unfortunately, in middle- and low- income countries, registry data is incomplete, leaving large components of the global pediatric end stage kidney disease population unidentified, and policy makers and healthcare providers unaware about the disease burden in specific regions.
The IPNA Global RRT Registry is an international platform that all countries into which all countries can submit data on children receiving kidney replacement therapy around the world.
The IPNA Registry Committee supervises the work of the IPNA Registry on behalf of IPNA Council and the contributing registries and RRT centers.
The IPNA Global RRT Registry collects geographic, demographic, diagnostic, and outcome data on pediatric kidney patients receiving kidney replacement therapy.
Every country around the globe is invited annually to submit this information.
Established registries can provide an export of registry data, while countries without an established registry will be able to use an online data entry system that is currently in development.
Since 2017, the IPNA registry has produced annual reports describing RRT incidence and prevalence, modality choices and patient survival rates. Detailed demographic and benchmarking figures are generated to compare paediatric RRT characteristics in countries on a regional and global level.
In addition to the annual reports, the registry aims to publish original research papers based on the collected data.