Information for Families

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

When a baby is diagnosed with NF1, there’s no way to tell exactly how his, or her, life will be affected. Some children are affected very mildly and may notice nothing more than skin changes, yet others are more severely affected. At least half of all children with NF1 experience problems with their learning and difficulties with attention and concentration. One in 4 children can be affected by Autism Spectrum Disorder (ASD) and, as such, find it difficult to function day-to-day in school, have trouble forming friendships and social relationships. Around 50% of children experience other behavioural difficulties such as Attention Deficit Hyperactivity Disorder (ADHD).

The EDEN study is trying to look for early warning signs of learning difficulties, ASD and ADHD. The study will follow babies with NF1 from 5 months onwards. We hope that this research study will help us develop new tests that may, in the long-term, help us with earlier diagnosis and developing new treatments for children with NF1.

Who can take part?

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’. This means that your doctor can collect a blood sample from the umbilical cord (the cord connecting the baby to the mother) when the baby is born. Collecting blood samples in this way does not hurt the baby at all and is completely safe. Please discuss this with your doctor or get in touch with us if you would like more information. We can put you in touch with your regional genetic service who will be able to offer you this testing. 

What is involved if you decide to take part?

If you are interested in participating in the study, you can get in touch with us via email - eden@manchester.ac.uk or shruti.garg@manchester.ac.uk   You can also call 0161 306 7967. We will ring you to talk to you about the study in detail and answer any questions you may have. If you decide to participate then, we will firstly ask some questions about your baby. If the study is suitable for your family, we will invite you, and your child, to visit our Babylab at the Centre for Brain and Cognitive Development in London.  Please see here for a YouTube video of the Baby Lab where the infants will be seen.  All expenses for your travel and accommodation are paid by the study. Please click here for further information.  A typical visit takes place over 5-6 hours, which includes time for meal and nap breaks.

We aim to be flexible to you and your baby’s needs and you can choose to split the visit over two days if that is more convenient for your family. We can provide a range of support to help you and your family participate in our study, and so please let us know if you have any additional needs.  Please see the YouTube video, of what we do at the Baby Lab in the EDEN study. 

Travelling to London

All your travel and accommodation expenses to London will be paid. We can also help you by booking your travel and accommodation for you. The Babylab is 10 minutes walk from Euston station in London.

How to contact us

Please contact the EDEN study administrator to request a study pack on eden@manchester.ac.uk or by calling 0161 306 7967.