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