Specialization
Medical Informatics, Pediatric Nephrology
Focus of research
GOAL:
Establish the International Pediatric Nephrology Association Global RRT Registry (IPNA Global RRT registry).
BACKGROUND
Children with chronic kidney disease are at risk for developing end-stage renal disease (ESRD) which requires renal replacement therapy (RRT). RRT is a life-saving yet high-cost treatment that requires medical expertise and sustained funding.
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.