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An Internet questionnaire was used to collect data from caregivers about seizure activities and drug therapies of patients with Angelman's syndrome (AS). A questionnaire to collect data on AS patient demographics, seizure types, laboratory diagnosis, and past history of anticonvulsant use was developed and distributed among the membership of multiple AS groups primarily through the Internet. Caregivers of AS patients were asked to rate each drug listed on the questionnaire for its effect on the patient's behavior and alertness and on the severity and frequency of the patient's seizures. A 6-point rating scale was used, with the lowest score representing the most favorable effect. Primary considerations of the survey were to reach as many people as possible, anonymously and quickly, in a widely comprehensible format. Data were collected between March 22 and October 9, 2002. Of the 88 complete questionnaires received, 75 were electronic and 13 were handwritten responses. Forty-seven percent of respondents reported patients' use of a combination of medications at some point, with 59 different combinations described, 21 of which consisted of three or more medications. The most commonly reported regimens were valproic acid and clonazepam, valproic acid and topiramate (with or without clonazepam), valproic acid and lamotrigine, and phenytoin and carbamazepine. Patient characteristics and seizure types were consistent with those of AS patients described in the literature. Topiramate and ethosuximide were rated favorably, consistent with previously published reports. Responses to the questionnaire were widespread and rapid, with 42 responses collected in the first week. An Internet questionnaire helped collect self-reported efficacy information from caregivers of AS patients.
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