The changing trends and outcomes in the epidemiology of paediatric renal replacement therapy in Europe: data from the ESPN/ERA-EDTA Registry

Principal investigator: 
Kitty Jager
Organisation: 
ERA-EDTA
Status: 
Active
Summary: 

What is already known about this topic and why is it important?

End-stage kidney disease (ESKD) in children is a rare, but serious condition and renal replacement therapy (RRT) is needed in order to sustain life. Each year, RRT is initiated in 5 to 6 per million children in Europe.

A study in European adult patients showed a decreasing number of new patients (incidence)  and an increasing number of existing patients (prevalence) between 2001 and 2011, but data specific for the paediatric population in Europe is lacking. Major improvements in paediatric renal care over the past 30-40 years have resulted in a changing paediatric RRT population, including very young patients and patients with more comorbidities. In children treated in other Western countries, varying trends in RRT incidence and prevalence were observed.

Data on trends in paediatric RRT are important to inform patients, their families, and healthcare providers and to aid healthy policy makers on future resource planning of paediatric RRT in Europe.

How will you carry out your study?

The European Society for Paediatric Nephrology/European Renal Association-European Dialysis and Transplant Association (ESPN/ERA-EDTA) Registry will be used to examine time trends in incidence, prevalence and patient survival for paediatric RRT in Europe.

How will you decide which patients are included in your study?

Data on RRT patients < 15 years from January 1, 2007 until December 31, 2016 will be included in this study. Only data of European countries contributing data to the Registry for the entire study period will be included.

How many patients do you anticipate including?

We anticipate to include about 4,200 patients who started RRT between 2007 and 2016.

For how long will you follow up these patients?

Patients will be followed from the start of RRT until death, loss to follow-up or  end of study (31 December 2016), whichever occurred first.

What new information will your study generate and how will this benefit patients?

We will present an epidemiological picture on trends in incidence, prevalence and patient survival for paediatric RRT in Europe. This information is important to assist counselling of the prognosis of affected children and their families.

Co-investigators: 
Marjolein Bonthuis, Enrico Vidal, Jérôme Harambat,

Guidelines

NICE accredited clinical practice guidelines 

Available here

23rd Annual Report

Analyses about the care provided to patients at UK renal centres.

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UKRR AKI Report

A report on the nationwide collection of AKI warning test scores. 

Read the report