Status: RECRUITMENT CLOSED
Individuals with Sturge-Weber Syndrome (SWS) sometimes have brain involvement which can result in seizures, stroke-like episodes and neurologic deficits. The purpose of this study is to conduct an investigation of the natural history, morbidity, and mortality in people with Sturge-Weber syndrome.
The research aims are:
- To continue to develop a national database of patients with Sturge-Weber Syndrome.
About this Study
This is a study of 600 individuals diagnosed with Sturge-Weber Syndrome. The goal of this study is to understand more about Sturge-Weber Syndrome and the possible treatments for this disease. Those participating in the database will be asked to complete a questionnaire.
To be eligible to participate, you must:
- Have Sturge-Weber Syndrome brain involvement
You are not eligible to participate if:
- You do not have Sturge-Weber Syndrome brain involvement
How to participate:
In order to participate, you must personally contact the study coordinator of any of the participating institutions by phone or by email. Please use the information below to inquire about participation:
- University of California San Francisco, San Francisco
Yuanbo Holley, Research Coordinator
Helen Kim, MPH, PhD, Principal Investigator
- University of Illinois at Chicago, Chicago
Jeffrey Loeb, MD, PhD
- Kennedy Krieger Institute, Baltimore
Teresa Williams, Research Coordinator
Anne Comi, MD, Prinicipal Investigator
- University of North Carolina at Chapel Hill, Chapel Hill
Hae Won Shin, MD
- Thomas Jefferson University – Wills Eye Institute, Philadelphia
Alex Levin, MD