UK autism brain banking programme
The Brain Bank for Autism & Related Developmental Research was established in 2009.
It is an initiative to develop a similar programme in the UK to the Autism Tissue Program, which has been developed in the US since 1998. Our Brain Bank is the first extension outside the US of the Autism Tissue Program and is integrated with it. UK charity Autistica provides the funding for this initiative.
The Autism Brain Bank is based in the Department of Neuropathology at Oxford University Hospitals NHS Trust and Oxford University. It is part of the wider Oxford Brain Bank, which includes three other research programmes (the Medical Research Council's Control Brain Bank, the Brains for Dementia Research Bank, and a collection linked to research into motor neuron disease).
The programme has a free-phone helpline on 0800 089 0707 which you can call if you prefer to gain information that way.
The donation of post-mortem brain tissue for this research programme is of fundamental importance to our understanding of the causes of autism and to help us develop more effective diagnostic measures and interventions. A separate brain bank for autism is necessary because we need to understand how, in autism, the brain develops over time and how the brain functions as a whole. However, our Brain Bank will promote close cooperation across all relevant brain banks in order to take the research forward.
Our research focuses on:
- people within the autism spectrum or their family members
- people not affected by autism but who are affected by epilepsy
- individuals without autism or epilepsy.
Donations from people who do not have autism are very important since this allows comparisons to be made between the brains of affected and non-affected individuals. A pledge to donate posthumously made by someone from the general population would help to provide the control tissue to make these comparisons. Unlike post-mortem research into dementia, this work analyses the development of the brain since it was formed. So donations by those in the general population, whose death occurs at any age up to 60 years, are greatly valued and needed. Some 20-30% of people with autism also have epilepsy, and it is vital to distinguish changes in the brain due to autism from those due to epilepsy. We also need to understand more about the ‘typical’ development of the brain. So it will be valuable if the donations needed to investigate autism, epilepsy and ‘normal’ development of the brain are made directly to this brain bank, rather than as part of general post-mortem organ donation.