Long term outcome with congenital heart disease
Research type
Research Study
Full title
Using National Congenital Heart Diseases Audit data to explore the impact of non-medical risk factors on late post-operative outcomes for children with complex congenital heart defects.
IRAS ID
252035
Contact name
Katherine L Brown
Contact email
Sponsor organisation
University College London, Institute of Child Health
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
3 years, 0 months, 1 days
Research summary
Many more children born with complex heart defects have surgery and survive to go home than was the case 10 to 20 years ago, but accurate information about what happens to them as they grow up is not available. We will use information that has been collected each time a baby or child has had a heart operation in the United Kingdom the last 16 years to explore this further. These data are always collected as part of a quality check process when children have surgery but up until now have only been used to assess short term mortality rates. We will work out the proportion of children with certain more complicated heart defects that survive until primary and secondary school ages as well as the proportion of children who have additional operations that were not planned as part of their expected treatment during childhood. We will find out whether children who are less well off or are from certain ethnic minority communities do worse than others. We will find out whether getting a defect diagnosed before birth or whether being treated at a hospital that cares for larger numbers of similar types of patient helps children do better.
REC name
London - Stanmore Research Ethics Committee
REC reference
18/LO/1688
Date of REC Opinion
15 Oct 2018
REC opinion
Favourable Opinion