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RESEARCH PROJECT
STUDYING SEIZURES IN SOTOS SYNDROME
-PARTICIPANTS NEEDED-
Dr. Kenneth Myers
from
McGill University/Montreal Children's Hospital
came to speak at our 2018 Conference in Montreal, Canada. He is conducting research on Sotos syndrome and seizures. The project has been reviewed and approved by the Sotos Syndrome Support Association Advisory Board of professionals. If you signed up to participate in Montreal already, you do not need to sign up again. If you are interested in participating, please see the details below. You DO NOT need to be a member of the SSSA to participate. It is anticipated that the project will be completed at the end of 2019 or beginning of 2020.
- Goal: To describe the experiences of a large number of people with Sotos syndrome who have experienced seizures (e.g. what types of seizures, what provoked seizures, what medications worked/didn't work).
- Why: This data will help doctors choose the best medication for people with Sotos syndrome and seizures, and will also help with counseling (e.g. are seizures likely to stop on their own, will they need medication for the rest of their life, etc
).
- Who Can Participate: Any person with Sotos syndrome who has had at least one seizure (including febrile seizures).
- What Does Participation Involve: A member of Dr. Myers' research team will call you and go through a ~20-minute interview focused on the seizures experienced. We will also ask for a medical record release form so we can obtain results of genetic testing, brain MRI and EEG studies. No photos or identifying information will be published.
- How do I participate: Send an e-mail to
kenneth.myers@mcgill.ca
including your phone number and a good time for us to call."
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