Information for Professionals

What is the Early DEvelopment in Neurofibromatosis type 1 (EDEN) study?

The EDEN study will systematically characterise the behavioural development in infants with NF1. Using cutting edge neuroscience techniques such as eye-tracking, EEG/ERP and Near Infrared Spectroscopy (NIRS), this study will seek to identify early markers of later 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.

                                                                                                                                                       

By the end of the project, we would be in a position to apply for a pilot RCT to use these biomarkers to test the effects of interventions that we are currently trialling in other populations. These include a parent-mediated intervention that supports social communication in infants (Green et al., 2015) and a gaze-contingent training package that targets attention control in infants (Wass et al., 2011).

Eligibility criteria

Infants under 14 months with a confirmed clinical or molecular diagnosis of NF1.

We have funding available for cord blood testing for NF1 mutation.  Please contact us if you would like more information.

Useful documents

Here is the parent invitation letter, the parent overview information sheet and the indication of interest form. 

Here's a video of what we do at the Baby Lab in the EDEN study and a video of the Baby Lab.

Contact

Please contact Dr Shruti Garg shruti.garg@manchester.ac.uk if you would like to discuss further.