“We have to do our utmost to ensure the best standard of care for pediatric kidney patients”

The mission of the International Pediatric Nephrology Association (IPNA) since its foundation in 1971 has been to provide training and to foster the exchange of knowledge among pediatric nephrologists and other health professionals who work in the field of pediatric kidney disease. Its central aim is to promote awareness and prevent diseases of the kidney and urinary tract in children. The association also endeavors to make the best standard of care and state-of-the-art treatments available for all pediatric kidney patients worldwide. The prevalence of chronic kidney disease (CKD) in children has been estimated as ranging from 15 to 74.7 per million children [1].

The IPNA Registry aims to collect data on the number of children with end stage renal disease. Currently, the Registry monitors 59 countries representing two thirds of the global childhood population. 23,000 children on chronic renal replacement therapy are followed in these countries. In most cases, CKD is caused by inherited disorders and congenital abnormalities. The latter are often diagnosed even before birth by fetal ultrasound, a routine diagnosis in pregnant women in the industrialized world. Such procedures are only partially available in developing countries, of course, and the disease is often not diagnosed before severe symptoms occur.

Other common causes of kidney disease in children include infections, glomerulonephritis, nephrotic syndrome or systemic diseases. Another aspect of pediatric nephrology is that ‘premies’, i.e. premature newborns with a very low birth weight, have an increased risk of developing CKD later in their lives and should therefore be closely monitored, as well as obese children.

Prevention of end stage renal disease is an important task, because such children suffer from a severely decreased quality of life and an adverse prognosis. In one European study [2], the 5-year survival of children dependent on dialysis was 89.5%. The mortality rate was 28.0 deaths per 1000 patient years overall. Cardiovascular events (18.3%) and infections (17.0%) were the main causes of death. The highest mortality risk was observed in children during the first year of dialysis and in children who were 0 to 5 years of age. Although transplantation is known to be associated with better outcomes, the mortality rate is still higher than in healthy children.

Furthermore, not only does end stage renal disease limit the life span of the children concerned, but dialysis and renal transplantation also have severe impacts on the quality of life (QoL) [3]. “This is something we must be aware of and this is the reason why we have to do our utmost to expand and strengthen prevention strategies and ensure the best standard of care for pediatric kidney patients all over the world”, explains IPNA President, Pierre Cochat, MD PhD.

From 17-21 October 2019, the 18th triannual meeting of the International Pediatric Nephrology Association will be held in Venice, Italy. The Scientific Committee, chaired by Julie Ingelfinger, has produced a comprehensive and topical program that will meet the needs and desires of participants from around the world, with special attention being given to both developed and under-resourced areas. Practical pediatric nephrology together with clinical and basic research will be highlighted throughout the 3 and a half day conference.

There will be 15 master classes, 60 symposia and various oral presentations and poster sessions. Five pre-congress meetings will focus on practical aspects of the management of children with kidney diseases and are aimed at fellows-in-training and practising pediatric nephrologists.


[1] ISN NEWS 56 February 2016. https://www.theisn.org/images/ISN_News_56-FINAL.pdf

[2] Chesnaye NC, Schaefer F, Groothoff JW et al. Mortality risk in European children with endstage renal disease on dialysis. Kidney Int. 2016 Jun;89(6):1355-62. doi: 10.1016/j.kint.2016.02.016.

[3] Splinter A, Tjaden LA, Haverman L et al. Children on dialysis as well as renal transplanted children report severely impaired health-related quality of life. Qual Life Res. 2018; 27(6): 1445– 1454