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Designing an Epilepsy Questionnaire for Patients with Christianson Syndrome

Description

Abstract:
Christianson syndrome (CS) is an autism-related rare genetic disorder due to changes in the SLC9A6 gene. A CS research registry of patients began in 2017 to advance the study of this condition and epilepsy was considered the top concern for caregivers. A questionnaire was developed to determine: quality of life of the patients and their caregivers; types, frequency, and onset of seizures experienced by the patients; medications taken by the patients; and other methods utilized by patients to control seizures. This study is important for families who learn that they have a child affected with a new syndrome often in advance of sufficient medical knowledge to understand the significance of the genetic diagnosis. The questionnaire is currently in its final draft and will be administered through an online format.

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This work is licensed under a All rights reserved license

Citation

Wahood, Samer, Kavanaugh, Brian, Clark, Melissa, et al., "Designing an Epilepsy Questionnaire for Patients with Christianson Syndrome" (2019). Summer Research Symposium. Brown Digital Repository. Brown University Library. https://doi.org/10.26300/d9mq-nx18

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  • Summer Research Symposium

    Each year, Brown University showcases the research of its undergraduates at the Summer Research Symposium. More than half of the student-researchers are UTRA recipients, while others receive funding from a variety of Brown-administered and national programs and fellowships and go …
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