Predictors of outcome in vein of Galen malformation

  • Research type

    Research Study

  • Full title

    Identifying early predictors of outcome in neonatal vein of Galen malformation.

  • IRAS ID

    169446

  • Contact name

    Vijaya Ganesan

  • Contact email

    v.ganesan@ucl.ac.uk

  • Sponsor organisation

    Great Ormond Street Hospital Foundation Trust

  • Duration of Study in the UK

    1 years, 5 months, 31 days

  • Research summary

    Vein of Galen malformation (VGM) is a rare disorder where there is a short circuit between arteries (blood vessel carrying blood to the brain) and veins (blood vessels carrying blood away form the brain) in the brain. This usually arises in the womb and thus babies are born with this problem. As blood is diverted into this “short circuit”, it is not directed towards the brain itself and other vital organs.
    VGM is rare, between 10 and 12 children a year are diagnosed in the UK. VGM is fatal if untreated but intact survival is possible with modern treatment and currently, two-thirds of survivors have long term difficulties with development and/or learning. The aim of this study is to determine the health and developmental outcomes of a group of children who have presented with VGM as newborn babies and to establish whether these could have been predicted early in the child’s clinical course. This will be done by assessing the development of UK children who presented with neonatal VGM between January 2006 and June 2014, and relating this to details of their hospital course and brain scans.

  • REC name

    London - Bloomsbury Research Ethics Committee

  • REC reference

    15/LO/1022

  • Date of REC Opinion

    7 Jul 2015

  • REC opinion

    Favourable Opinion