Epilepsy Research UK (ERUK) is joining forces with Autistica and Young Epilepsy to commission a new study to better understand the prevalence and incidence of epilepsy in autism.
Why is this research important?
People who are autistic and have epilepsy face significant challenges and inequalities. We know that approximately 8.4 million people worldwide have both conditions. On average, autistic people with epilepsy have poor quality of life, poor health and die early. More research is vital to increase our understanding of epilepsy and autism and how the two conditions interact.
The commissioned research will aim to create a dossier outlining the scientific evidence and scale of the issue in human, social and economic terms. This project will highlight potential areas in the field where research is needed, and where strategic or collaborative action can be taken in order to make a real difference to people who are autistic and have epilepsy.
This study builds on ERUK’s 2019 International Expert Workshop on Epilepsy and Neurodevelopmental disorders, which brought together world leading experts and partner organisations, including Autistica and Young Epilepsy. The workshop showcased the latest research and seeded new research ideas and collaborations. The three organisations made epilepsy in autism a research priority, and ERUK has since announced a joint fellowship with Autistica aiming to improve epilepsy treatment for autistic people (read more here), and a joint fellowship with Young Epilepsy, aiming to improve epilepsy treatment for young people (read more here).
The organisations wish to fund the creation of an evidence dossier focusing on:
- A literature review of globally published peer-reviewed papers that focus on both autism and epilepsy, from basic/fundamental science to applied, where appropriate.
- Synthesis of existing economic analysis of the cost of epilepsy in autistic people/extrapolation from existing sources if the evidence base is limited.
- Synthesis of all evidence to create a dossier that is accessible to a wide range of researchers, policymakers, funders and professionals.