Epilepsy Research UK does not run any trials itself. We have no links with groups running trials so we won’t be able to help you get enrolled in one via the office. However if you do want to get involved in epilepsy research, here are some possible avenues for exploration.
Taking part in clinical trial research
To take part in a clinical trial a person usually needs to be referred to the lead researcher (principal investigator) by their specialist/GP, and they must fit the eligibility criteria for that study. Click here to access the UK Clinical Trials Gateway, where you can search for UK clinical trials in epilepsy that are recruiting people. This site also gives useful information about taking part in a clinical trial.
For information about the types of question that clinical trials investigate, please click here.
Click here to view the Royal College of Paediatrics and Child Health (RCPCH) Infants’, Children’s and Young People’s Child Health Research Charter.
Epilepsy Society Brain and Tissue Bank
This initiative – the result of a collaboration between Epilepsy Society and University College London – allows people to donate brain and other tissue (e.g. spinal cord and skin samples) for use in epilepsy research. It is an easy and valuable way to contribute, not only for people who have epilepsy, but also for those with ‘healthy’ brains. For more information please click here.
Helping in basic research
Basic researchers need human tissue for their investigations. Using human tissue is very heavily regulated by law in the UK. Researchers can’t take anyone’s tissue without the patient’s informed consent: you have to know that the tissue will be kept and what it will be used for. You will have to sign one or perhaps several consent forms to confirm this.
If you have surgery for your epilepsy, you may be asked if you consent to the doctors’ taking a sample of your tissue for research purposes. If you want to help basic research into epilepsy, please say yes.
Alternatively you can make a post-mortem donation arrangement: you can arrange to leave your body or a specific organ to a hospital or research team for their work. Contact your doctor to find out how this can be done. You’ll have to sign consent forms for this too. You can always cancel your consent if you change your mind afterwards.
Taking part in a qualitative research trial
Epilepsy Action are currently running a number of qualitative research projects you may be able to help them with. Have a look at the research pages on their website here.