Principal Investigator: Dr Susan Duncan
Institution: University of EdinburghTags: 60410, cohort study, data-accuracy, diagnosis, epilepsy, validation-study
Epilepsy is one of the commonest causes of neurological disability worldwide, with some 70 million people suffering from it worldwide. Epilepsy is more than just seizures. There is still a stigma associated with the condition with people facing discrimination in employment, and difficulties in accessing education. It is associated with anxiety and depression, autistic spectrum disorders and learning difficulties. Epilepsy is associated with premature mortality, with young adults being at risk of sudden death due to seizure, accidents and suicide. Many of these deaths are preventable.
One of the problems facing doctors is the accurate diagnosis of epilepsy. There are no blood tests or scans that will reliably confirm or refute the diagnosis. Studies have shown a misdiagnosis rate of between 2% and 20% with, cardiological, and other neurological conditions which can mimic seizures misleading the unwary. This presents problems now that large data sets like the UK Biobank are available to researchers. Because it is inevitable that some of the people listed as having epilepsy may have another condition.
We want to validate the cohort of people from Edinburgh who are registered as having epilepsy. By this we mean we will cross check the diagnosis of epilepsy with data available to us about that person through Information Services Scotland(ISD) on admissions to hospital because of seizures, if they are taking any anti-epileptic drugs(which is a very accurate way of finding people with epilepsy) and looking at the death certificates of any of this biobank group who sadly may have passed on. We have used this process before in another study and found it is a very accurate way of confirming if a person has epilepsy or not.
It is important we do this because once validated we can be confident that what we learn from these individual’s data is accurate and that the conclusions we, or future researchers, come to about causes of premature or preventable death or the incidence of dementia in people with epilepsy are sound and can be relied on to change practice and improve the treatment of people with epilepsy.