Brain Vascular Malformations Consortium
Phase: Recruiting
Condition(s): Sturge-Weber Syndrome
Who Can Take Part in This Study?
You or your child have Sturge-Weber Syndrome (SWS) brain involvement
What Is the Purpose of This Study?
The goal of this study is to understand more about Sturge-Weber Syndrome and the possible treatments for this disease.
Many important clinical questions about SWS remain unanswered or controversial. For example, how does family history impact the clinical manifestation of the individual affected by SWS? What pregnancy exposures or factors occur with increased frequency in individuals with SWS? Which patients would be best served by a hemispherectomy? The answers to these and other questions will eventually be addressed with the aid of the consortium database.
What Will Happen During This Study?
Those participating in the database part of the study will be asked to complete a questionnaire and review their answers at their next appointment with a doctor who cares for SWS.
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