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EDEN study

Identifying early markers of autism and attention deficit hyperactivity disorder in Neurofibromatosis type 1 (NF1).

EDEN study

The EDEN study aims to investigate early social, communication and attention development in infants who have a parent with NF1 or have NF1 themselves.

This study is for families who have a history of NF1 in the family and have a baby under 14 months of age. Babies don’t need to have a diagnosis of NF1 to take part.


About the study

EDEN is designed to identify early markers of behavioural difficulties such as autism and ADHD by understanding social and cognitive development of babies with NF1.

All babies born in a family with a history of NF1 are welcome to participate. We will compare the development of babies who have NF1 to those babies who do not inherit NF1.

By understanding early development, our aim is to speed up the discovery of treatments that can be used to prevent the emergence of learning, social and behavioural difficulties in NF1.

The study is a collaboration with Birkbeck, University of London and BASIS, The University of Manchester and Central Manchester University Hospitals NHS Foundation Trust.

The EDEN study is funded by Action Medical Research for Children, Great Ormond Street Hospital Charity, the Rosetrees Trust and the Medical Research Council.

More information about NF1 can be found on the Nerve Tumours UK and Childhood Tumour Trust websites.

What is NF1?

NF1 is a genetic disorder which affects one in every 2,500 of the population.

NF1 affects individuals differently. For some people, NF1 is mild and may only cause some skin changes.  

Around a third of individuals with NF1 will have a medcal problem related to the disorder at some time in their lives. For more information about the disorder visit

In children with NF1, mild learning problems are common. Our research suggests that up to 50% of children with NF1 may have ADHD and up to 30% may have an autism spectrum disorder (ASD).

These conditions are typically not diagnosed until middle childhood, limiting the effectiveness of interventions.

There is an urgent need to develop new early assessment and treatment approaches for learning and behavioural difficulties that are associated with NF1.


Take part in the study

We are inviting babies under the age of 14 months to this study. Babies either need to have a diagnosis of NF1 or be born in a family where either parent (mother or father) has a diagnosis of NF1.

Families interested in the study can contact the study team by emailing



Information for parents

This study is for families who have a baby under 14 months of age diagnosed with NF1 by your doctor or born in a family where either parents has NF1

This study is currently recruiting and is open to all families with NF1 in the UK.

If you are pregnant and have NF1 (or your partner has NF1), you can contact the study team to participate once the baby is born.

If you are interested in participating in the study, get in touch. We will then talk to you about the study in detail and answer any questions you may have.

If the study is suitable for your family, we will invite you, and your child, to visit our Baby Lab at the Centre for Brain and Cognitive Development in London. A typical visit takes place over 5-6 hours, which includes time for meal and nap breaks. We cover travel and hotel expenses for the research visit.


Information for clinical partners

The EDEN study will systematically characterise the behavioural development in infants with NF1.

Using cutting edge neuroscience techniques such as eye-tracking, electroencephalography (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.

In order to make a referral to the study or find out more information contact or get in touch with


Contact us

If you wish to participate in the study or simply have any questions, please get in touch.

Email: /  

Tel: 0161 306 7967