The main aim of the EDEN study is to investigate early social, communication & attention development in infants with NF1.
- Use detailed clinical assessments to study the development in infants with NF1.
- Use measures of brain activity & eye gaze to see whether we can find early brain markers that can predict later autism or ADHD.
- Compare the development of infants with NF1 to other groups of infants who are also more likely to develop autism or ADHD (because they have an older sibling with autism or ADHD), and to a control group of infants who are at low-risk.
In collaboration with Birkbeck, University of London and BASIS, the University of Manchester and Central Manchester University Hospitals NHS Foundation Trust are looking to systematically characterise the behavioural development in infants with NF1. This study will seek to identify early markers of autism and ADHD in NF1. Outputs from this study will accelerate the development of early interventions by providing suitable infant outcome measures for treatment trials.
The EDEN study is funded by Action Medical Research for Children and Great Ormond Street Hospital Charity.
Information for Families
This study is for families with a history of NF1 who have a baby under 14 months of age (the baby doesn’t have to have a diagnosis of NF1). This study is open to all families with NF1 in the UK.
If you are pregnant and would like to know if your baby has NF1, you can ask your doctor for 'cord blood testing'. Please find further Information for Families here.
Information for Professionals
If you are a health care professional and would like to know more about EDEN, see Professionals for more information