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National General Practice Study of Epilepsy
Epilepsy is the tendency to have recurrent, unprovoked epileptic seizures. The seizures are the result of excessive electrical activity in the brain. Seizures can have many different causes and in some people we do not know the cause. Epilepsy is not a single disease but rather a symptom of many different disease pathways. As a result it is not easy to predict the outcome in any individual with seizures.
The NGPSE was set up in the early 1980s with the intention of following a group of people with newly diagnosed seizures (including children with febrile seizures) to determine the outcomes. Patients were referred to the study by their GPs at the time, but were never contacted directly by the study team. Accepted practice at the time was that patients did not need to be asked for consent, particularly as their care was never affected in any way by inclusion in such studies.
Over a thousand patients were initially referred by their GPs, of whom a quarter were children with febrile seizures. About two thirds had definite or probable epilepsy.
At the 12-year follow-up only six percent of children with febrile convulsions had gone on to develop epilepsy. This is slightly higher than the expected rate in the general population, but confirms the overall excellent prognosis for children with febrile seizures.
Definite and probable seizures
Results from this study to date have provided valuable information regarding outcomes in the short- and medium-term with regard to seizure recurrence and mortality. After nine years almost 90% were found to be in remission from seizures. After 12 years there was a slightly elevated risk of dying relative to the general population.
We now have the opportunity to complete our analysis of outcome for people with newly diagnosed epilepsy over 25 years. This will be one of the longest studies running. The principal aims of the study at this point are to determine long-term outcomes in patients originally diagnosed with both new onset seizures and febrile convulsion. As has always been the case, all information will be fully anonymised and no patient-identifiable information will ever be published.
For any further information, please see the links below, or contact Dr Aidan Neligan at 020 3108 0093 or by email firstname.lastname@example.org .
- J Neurol Neurosurg Psychiatry. 2001 Nov;71(5):632-7. The dynamics of drug treatment in epilepsy: an observational study in an unselected population based cohort with newly diagnosed epilepsy followed up prospectively over 11-14 years. Lhatoo SD, Sander JW, Shorvon SD.
- Eur Neurol. 1999;41(4):179-86. Febrile convulsions in 220 children--neurological sequelae at 12 years follow-up. MacDonald BK, Johnson AL, Sander JW, Shorvon SD.
- Epilepsia. 1997 Jan;38(1):31-46. Prognosis of epilepsy: a review and further analysis of the first nine years of the British National General Practice Study of Epilepsy, a prospective population-based study. Cockerell OC, Johnson AL, Sander JW, Shorvon SD.
- Lancet. 1995 Jul 15;346(8968):140-4. Remission of epilepsy: results from the National General Practice Study of Epilepsy. Cockerell OC, Johnson AL, Sander JW, Hart YM, Shorvon SD.
- Neuroepidemiology. 1989;8(5):221-7. National General Practice Study of Epilepsy and Epileptic Seizures: objectives and study methodology of the largest reported prospective cohort study of epilepsy. National General Practice Study of Epilepsy and Epileptic Seizures (NGPSE). Hart YM, Sander JW, Sharvon SD.
- Lancet. 1990 Nov 24;336(8726):1271-4. National General Practice Study of Epilepsy: recurrence after a first seizure. Hart YM, Sander JW, Johnson AL, Shorvon SD.
- Lancet. 1990 Nov 24;336(8726):1267-71. National General Practice Study of Epilepsy: newly diagnosed epileptic seizures in a general population. Sander JW, Hart YM, Johnson AL, Shorvon SD.