End-Stage Renal Disease (ESRD) in early infancy

Lead investigator 

Dr Karl McKeever

Consultant Paediatric Nephrologist
Department of Paediatric Nephrology
Royal Belfast Hospital for Sick Children
Royal Hospitals
Belfast Health and Social Care Trust
Falls Road
Belfast BT12 6BE

E-mail: karl.mckeever@belfasttrust.hscni.net

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 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, 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 made to dialyse or treat palliatively, yet the experience of the infant population has not been reported.

Duration:  May 2011 to May 2012

Funding: The Childrens’ Renal Fund, Belfast

Ethical approval:  This study has been approved by the Belfast REC (Ref 10/NIR03/32)Study Contact Details

Further Information

• Study Flyer (MS Doc, 32KB, 1 page)
• Study Protocol (PDF, 21KB, 3 pages)
• Questionnaire (MS Doc, 314KB, 5 pages)
• Public Information (PDF, 119KB, 4 pages)