Registry

Understanding the differences in disease burden internationally

Introduction of the IPNA Global RRT Registry

The IPNA Global Renal Replacement Therapy (RRT) Registry was developed to increase the quality and breadth of information on pediatric end stage kidney disease and kidney replacement therapy around the world.

About us

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.

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Objectives of the IPNA Global RRT Registry

To empower clinical and translational research through information on disease demographics and comorbidities in children with end-stage kidney disease

To provide information on renal replacement therapy practices and outcomes in the context of socioeconomic conditions in children around the globe

To facilitate interventional trials in children undergoing dialysis and kidney transplantation

Regional, national, and International RRT registries are encouraged to affiliate with the IPNA Global RRT Registry as cooperating partners. The IPNA Global RRT Registry will neither compete nor replace existing registries, but seeks to cooperate, support, and complement their activities.

The Registry Committee

The IPNA Registry Committee supervises the work of the IPNA Registry on behalf of IPNA Council and the contributing registries and RRT centers.

IPNA Registry Chair*

Franz Schaefer

IPNA Registry Vice Chair*

Brad Warady

IPNA Registry Coordinator*

Dagmara Borzych-Duzalka

ESPN Representative

Jaap Groothoff

ALANEPE Representative

Francisco Cano

AsPNA Representative

Hong Xu

JSPN Representative

Kenji Ishikura

ASPN Representative

Alicia Neu

AfPNA Representative

Hesham Safouh

ANZPNA Representative

Jonathan Craig

*Executive Committee Members

Data Collection

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.

Output

Reports

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.

Publications

In addition to the annual reports, the registry aims to publish original research papers based on the collected data.

Reports

To date, pediatric nephrologists in 34 countries are using the online platform to join the IPNA registry and at the same time establish their own national RRT registry.

Annual Report 2017 Annual Report 2018 ANNUAL REPORT 2021

For more information please contact IPNA Office

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