Online Epilepsy Resources for You and Your Patients

Check out this collection of information on patient education and medical websites focused on epilepsy.

The Educated Patient

You Are Not Alone: Toolkit for Parents of Teens with Epilepsy

This toolkit from the CDC addresses the emotional, psychological, and social challenges faced by children with epilepsy and explains how parents can help children “accept the limitations on their freedom and choices that may be necessitated by the seizure disorder.” The printouts include letters from parents of teenagers with epilepsy, listings of parenting resources and family support groups, tips on maintaining the marital relationship and relationships with other children, and more. Multimedia offerings include an audio file of three typical parent—teen conversations from both perspectives, and “You Are Not Alone,” a documentary video.

Medical Websites

Epilepsy.com/Professionals

Neurologists should be sure to bookmark this website, which contains several resources for physicians. Among them are a resource library, conference webcasts, continuing medical education opportunities, and an “Innovation Center,” where visitors will find information on how to get involved with the process of advancing epilepsy therapies. Physicians will also find information on several ongoing research projects about epilepsy, such as the Epilepsy Therapy Project. Updated news and an option to sign up for the site’s mailing list are also available.

PDA Resources

Cochrane Reviews in Epilepsy

Cost:$29.95

Memory Requirement:8.07MB (Android)/4.85MN (BlackBerry)/2.37MB (Palm OS, without images)/5.6MB (Palm OS, with image)/5.15MB (Pocket PC)

Demo Available:Yes

This epileptic reference is an easy way for neurologists to remain up-to-date on the most recent news regarding the disease. The Cochrane Review “is the best single source of reliable evidence” for healthcare. Reviews in Epilepsy has the capacity to create a “personal” library of specific topics of interest and the ability to cross-reference with other Skyscape references.

Clinical Trials

Epilepsy Phenome/Genome Project

Study Type:Observational

Age/Gender Requirement:<60 years (male/female)

Sponsor:University of California, San Francisco

Purpose:To “collect detailed information about the characteristics and genetics of a large number of individuals with epilepsy” as part of a “large-scale, national, multi-institutional, collaborative research project aimed at advancing the understanding of the genetic basis of the most common forms of epilepsy.”

Language Mapping in Patients with Epilepsy

Study Type:Observational

Age/Gender Requirement:7-55 years (male/female)

Sponsor: National Institute of Neurological Disorders and Stroke

Purpose: To “examine how certain language skills, such as naming objects, understanding spoken language and reading are organized in the brain and how they are affected by seizures” in order to “test the hypothesis that successful left hemisphere epilepsy surgery for children and adults improves abnormalities in the functional anatomy of language that may be associated with uncontrolled localization-related seizures.”

Search for Genes Influencing Childhood Absence Epilepsy Study

Study Type:Observational

Age/Gender Requirement:Not Listed (male/female)

Sponsor: Mount Sinai School of Medicine

Purpose:To determine what genes are involved in the development of childhood absence epilepsy by investigating “whole families with many members affected with epilepsy or both parents and a child with CAE of families without other affected members (trios) and… comparing patients with CAE to healthy individuals without epilepsy.”

Think we missed an important resource? Post a comment below about it to help your colleagues and their patients.