Brain and tissue based research
Research into human brain tissue has already shown significant results.
For example, it has helped to underline the importance of wearing helmets for those with repeated seizures which might cause falls and head injury. Research has established that it is the number of times a person hits their heads rather than the number of seizures that can cause some types of cumulative damage to the brain.
Brain and tissue based research can also investigate mechanisms that may increase the risk of sudden and unexpected death in epilepsy.
Research has also contributed to findings that show how a correct diagnosis of Dravet syndrome – a difficult-to-treat form of epilepsy that can occur in early infancy – could still lead to improved quality of life and cognitive performance.
We need brain and other tissue donated by people with and without epilepsy so researchers are able to compare differences.
To become a donor, you need to join our donor register by calling our Brain and Tissue Bank team on 020 3448 4009 or emailing us at firstname.lastname@example.org. The team will send you further information and the forms for you to complete.
After a donor dies
After a donor dies, the next-of-kin (partner, close relative or legal representative) should inform the person’s GP or the hospital of the donor's wishes to donate their brain for epilepsy research. The Brain and Tissue Bank should be informed immediately on 020 3448 4009.
The Brain and Tissue Bank team will then contact either the hospital or the donor’s doctor, the coroner if needed and the funeral director, and will also keep the family informed.
The team will arrange for the body to be taken to the hospital nearest to the place of death, and for a pathologist to remove the brain and other tissue. The tissue will be taken to the Brain and Tissue Bank where it is quickly processed and stored.
If a person dies suddenly and SUDEP – sudden unexpected death in epilepsy – is suspected, there may be a post mortem to establish cause of death. If the donor’s family still wish for the brain to be donated for epilepsy research, they should inform the coroner’s officer who can arrange to release the brain to the Brain and Tissue Bank at an appropriate time.
Understanding the complexities of the brain is key to understanding the causes of epilepsy and the impact of seizures on the brain. It is also pivotal in improving the diagnosis and treatment of epilepsy.
Read how we are working to understand the genetic architecture of each individual person's epilepsy through our world leading genomics research programme.
Neuroimaging enables us to look deep inside the brain to learn more about the impact of seizures on its structure and function.