EDEN - Early DEvelopment in Neurofibromatosis type 1

  • Research type

    Research Study

  • Full title

    EDEN - Prospective study of autism emergence from infancy in Neurofibromatosis type 1



  • Contact name

    Jonathan Green

  • Contact email


  • Duration of Study in the UK

    3 years, 8 months, 28 days

  • Research summary

    Neurofibromatosis Type 1(NF1) is a common genetic condition affecting 1 in 2500 people. Having NF1 increases the risk of conditions such as Autism Spectrum Disorders (ASD) and Attention Deficit Hyperactivity Disorder(ADHD). Early identification of ASD and ADHD is crucial in order to improve outcome.
    The aim of this study is to understand the cognitive and brain development in infants with NF1. At two to five testing points, we will use non-invasive methods such as electroencephalography (EEG) , Near Infra Red Spectroscopy (NIRS), eye-tracking, measurements of heart rate, perspiration to tell us about neurocognitive development. When children are 3 years old, we will also measure autism and ADHD symptomatology. This will help us link information about cognitive and brain development in infancy to symptom level in early childhood. This research will help us understand the development of ASD and ADHD in NF1.
    The approaches proposed in this study have been in use for over the last decade by Professor Johnson and his team at Birkbeck, London and are similar to ongoing studies of high-risk infants (BASIS 06/MRE02/73).

  • REC name

    North West - Greater Manchester Central Research Ethics Committee

  • REC reference


  • Date of REC Opinion

    7 Jun 2016

  • REC opinion

    Further Information Favourable Opinion