Background

Epilepsy is a relatively common neurological disorder affecting up to 1-2% of the population. Childhood is a particularly active time for the development of epilepsy although seizures can occur at any age.

Much like cancer, epilepsy is not a single disorder but a large collection of specific disorders. These disorders share, as their unifying characteristic, the occurrence of seizures. Seizure control is a key priority in the treatment of epilepsy.

Increasing evidence raises questions about when we can know for sure that someone's epilepsy is fully resolved and in permanent remission. In addition to seizures, however, people with epilepsy, particularly epilepsy of childhood onset, often have other behavioral and cognitive difficulties. The implications of these "co-morbidities" for better understanding the nature, causes, and treatment of epilepsy are just now becoming the focus of research. The consequences to the individual in the long-term are also of tremendous importance.

Connecticut Study of Epilepsy

The Connecticut Study of Epilepsy is a longitudinal study of a prospectively recruited and followed community-based cohort of children with newly diagnosed epilepsy.  The study has gone through three main phases.

The original goals of the study when it was first started in 1993 were to determine the risk and predictors of intractability in childhood onset epilepsy with special emphasis on diagnosing the specific form of epilepsy or syndrome. The International Classification of the Epilepsies had just been updated in 1989 and international guidelines for epidemiological studies were published in 1993.  Thus the study was poised to incorporate this new diagnostic classification and new guidelines in a community-based setting. 

We addressed several issues concerning the mid-term (5-10 years) seizure outcomes, mortality, status epilepticus, as well as developmental, and educational outcomes.   A major thrust of our endeavors has recently been understanding quality of life, behavioral disorders, and neuropsychological functioning and the relationship of these outcomes to seizure outcomes, antiepileptic drug (AED) use, and specific types of epilepsy. Sibling controls have been invited to participate in this phase of the study as well. A neuroimaging component was included and is permitting us to address new and exciting questions about brain structure and epilepsy.

Our study is devoted to the understanding of seizure outcomes as well as the social, educational, employment, and behavioral impact of childhood and adolescent-onset epilepsy on the individual as well as on the family.  Up until now, we have been focused on outcomes in the first several years after the child was initially diagnosed with epilepsy.  As the members of the Connecticut Study of Epilepsy are quickly reaching later adolescence and adulthood, our goals are to continue these endeavors and provide information relevant to the young adult.  In doing so, we hope to provide information that will allow families and physicians to have a broader understanding of this disorder and to be aware of and respond quickly and effectively to the needs of the children and young adults with epilepsy so that they can get on with the rest of their busy and very productive lives.

Although our research tends to focus on areas in which people have difficulties, it is important to remember that these difficulties are often just a very small part of one’s life. The children and their parents and siblings who have participated in the Connecticut Study of Epilepsy are a strong, accomplished, and energetic group. In time, we hope to be able to share some of their activities and accomplishments with you.

We also intend to provide high quality information about the complex patterns of seizure remission and occurrence over a prolonged period of time.  As many participants in this study know, the simple statements about the probability of becoming seizure-free do not entirely reflect their own experiences.  Epilepsy is a complex disorder with a complex outcome which the Connecticut Study of Epilepsy is successfully documenting.  This information is, in turn, valuable to patients, families and physicians alike.