Welcome to the IPNA Global RRT Registry

Introduction of the IPNA Global RRT Registry

The IPNA Global Renal Replacement Therapy (RRT) Registry is developed to increase the quantity and the quality of demographic information on paediatric ESRD and RRT around the world.

About US: The IPNA Global RRT Registry

In paediatric nephrology there is broad consensus that systematic monitoring of the incidence, prevalence and outcomes of renal replacement therapy (RRT) in children is desirable. Unfortunately, registry information is scattered and incomplete in many countries and databases are not available for many low- and middle-income countries, leaving a large part of the global paediatric ESRD population unidentified and health care providers uninformed about the size of the treatment challenges ahead. Therefore, we have initiated a registry to collect population based information on children receiving renal replacement therapy around the world, I.e. the “IPNA global RRT Registry”.

Objectives of the IPNA Global RRT Registry:

(1)    To empower clinical and translational research through information on disease demographics and comorbidities in children with end-stage kidney disease
(2)    To provide information on renal replacement therapy practices and outcomes in the context of socioeconomic conditions in children around the globe
(3)    To facilitate interventional trials in children undergoing dialysis and kidney transplantation

Regional, national and (international RRT registries are encouraged to affiliate with the IPNA Registry as cooperating partners. The IPNA Registry will neither replace nor compete with the existing registries but will co-operate, support and complement their activities.

About Us: 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
And représentative of IPNA Leadership  
IPNA Registry Coordinator* Sophie Ploos van Amstel
Supervisor of IPNA Registry Coordinator* Marlies Noordzij
AMC Team Director* Kitty Jager
ESPN Representative Jaap Groothoff
ALANEPE Representative Francisco Cano
AsPNA Representative Hong Xu
JSPN Representative Kenji Ishikura
ASPN Representative Alicia Neu
AfPNA Representative Hesham Safouh

*Executive Committee Members

Participating (Inter)national registries

Below you will find a list of participating (inter)national registries with their contacts.

Data collection

The IPNA Registry currently collects the following data: country, sex, date of birth, primary renal disease, start date of first RRT, history of RRT with dates and changes of modality, date and cause of death, information concerning transfer from or to other renal registries.

Every country around the globe is invited annually to submit this information.

Existing registries can provide a registry data excerpt, while RRT centers in countries without established registries can use an online data entry system (in development).

Output:

Reports
Starting in  2017, the IPNA registry will produce annual reports describing RRT incidence and prevalence, modality choices and patient survival rates. Detailed demographic and benchmarking figures will be 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.