Survival of children born with congenital heart disease

  • Research type

    Research Study

  • Full title

    Survival and predictors of survival in children born with congenital heart disease

  • IRAS ID

    117092

  • Contact name

    Judith Rankin

  • Contact email

    judith.rankin@ncl.ac.uk

  • Sponsor organisation

    Newcastle University

  • Research summary

    The overall aim of the proposed project is to match death registrations held by the Office for National Statistics (ONS) to high quality population-based congenital anomaly data collected by the British Isles Network of Congenital Anomaly Registers (BINOCAR) on children born with a congenital heart disease (CHD). Using the matched data we will describe the one, five, ten and twenty year survival of children born with a CHD. We will report survival for all CHDs combined and by subtype (e.g. Tetralogy of Fallot, ventricular septal defect etc), which differ by severity. Additionally we will examine predictors of survival using demographic data collected for each case by the BINOCARs including: maternal age, antenatal diagnosis (diagnosed and undiagnosed), index of multiple deprivation, infant sex, birth weight, gestational age at delivery, associated anomalies, number of fetuses, ethnicity and year of delivery. For one register (the Northern Congenital Abnormality Survey) we will also investigate the impact of surgery on survival. Lastly, we will use the data to predict survival in children with CHDs in the future, assuming current and past trends continue.

  • REC name

    North East - Newcastle & North Tyneside 2 Research Ethics Committee

  • REC reference

    13/NE/0188

  • Date of REC Opinion

    1 Aug 2013

  • REC opinion

    Favourable Opinion