BPSU study - End-Stage Renal Disease (ESRD)

Surveillance of end-stage renal disease in early infancy concluded in May 2012. The study group are yet to publish a paper.

Lead investigator

Dr Karl McKeever
Royal Belfast Hospital for Sick Children
Belfast Health and Social Care Trust
Falls Road
Belfast BT12 6BE
E-mail: karl.mckeever@belfasttrust.hscni.net

About the study

Overview

End-stage renal disease (ESRD) in early infancy is rare, with an incidence of 0.31 per million UK population per year, but presents complex clinical and ethical problems.

Controversy continues as to how best to care for this population with reports of poor outcome and significant morbidity.

There is anecdotal evidence in the UK of increasing numbers of young infants being treated with dialysis but there is limited data available on the outcome of ESRD during the first six months of life.

National ascertainment is required to establish a sufficient cohort, in order to provide accurate data on this rare but important condition.

It is now possible to support infants with ESRD through Renal Replacement Therapy (RRT). However, this population differs from older children receiving dialysis in terms of their primary renal diagnosis and are more likely to be diagnosed with renal dysplasia or obstructive uropathy and have more co-morbidities which impact upon long-term outcome.

The provision of long-term dialysis for neonates with ESRD presents major public health issues with complex clinical, ethical and health-care resource issues.

Improvements in neonatal survival and advances in RRT have resulted in higher numbers of infants presenting with ESRD for whom a decision has to be made to dialyse or treat palliatively, yet the experience of the infant population has not been reported.

You can download the protocol card, including references, below.

Case definition

Patients from age four weeks to six months with presumed end stage renal failure who have a serum creatinine of equal to, or greater than 120 micromols/l.

Reporting instructions

Please report any infant you have seen for the first time in the UK or Ireland since 1st May 2011 who satisfies the case definition regardless of country of birth.

Duration

May 2011 to May 2012.

Funding

The Childrens’ Renal Fund, Belfast.

Approval

This study has been approved by the Belfast REC (Ref 10/NIR03/32).