Genomics England are looking for autistic adults and children with mild, moderate or severe learning disability and autism to take part in a large scale study looking into the genetics of a range of rare conditions. The study aims to collect and compare genomes from 100 families in London and the South East affected by autism and learning disability as part of the 100,000 Genomes Project.
The project aims to improve future diagnosis and treatment for a range of conditions and by the time it finishes, Genomics England plan to have setup a personalised genome-based treatment service on the NHS.
Autistic people that take part in the study may get results on their individual genome early on, whilst some may receive results years later as researchers learn more about how to use genome sequence information. Families can choose which results they wish to receive about their health.
Parents will be asked to read and complete a form giving their child’s permission to take part. Individuals taking part will need to give blood samples (up to three tablespoons), or other samples such as saliva. This specific part of the study has been designed for families with autism and learning disability and will therefore be sensitive to the needs of the participants. As with any study, those involved can choose to opt out at any time.
To read more about the study, Genomics England have created an information pack about the wider project.
To register an interest, contact the Bio Resource team at the South London and Maudsley NHS Trust via email: bioresource@kcl.ac.uk or on freephone: 0800 9951 999 or 020 7848 5381