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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Prof
Jonathan
Green
jonathan.green@manchester.ac.uk
Genetics
Research
genetics.research@mft.nhs.uk
Other congenital malformationsBehavioural and emotional disorders with onset usually occurring in childhood and adolescenceDisorders of psychological development
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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).
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Interventional type: Psychological & Behavioural;
You can take part if:
You may not be able to take part if:
Exclusion criteria include conditions that may make harder for an infant to participate including any serious physical complications due to NF1 (judged by the referring clinician), significant vision or hearing abnormalities, significant prematurity, parents with evidence of significant learning difficulties or who are unable to give informed consent.
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
The study is sponsored by University of Manchester and funded by ACTION MEDICAL RESEARCH .
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Read full details
for Trial ID: CPMS 31719
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