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 integrate longitudinal clinical data, radiological data, and blood biomarkers of Sturge-Weber syndrome patients.
The research aims are:
- To integrate longitudinal clinical data, radiological data, and blood biomarkers of Sturge-Weber syndrome patients.
- Identify plasma and imaging biomarkers sensitive to exacerbation of clinical symptoms including seizures, headaches, or stroke-like episodes.
- For enrolled patients who present with severe neurological symptoms screen blood samples for inflammatory changes.
About this Study
This is a study of about 250 individuals diagnosed with Sturge-Weber Syndrome. The goal of this study is to understand more about Sturge-Weber Syndrome, the possible treatments for this disease, and identify targets for clinical trials. Those participating in the database will be asked to consent to blood draws.
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
Mateo Ortiz Ambrosio, BS, Research Coordinator
Helen Kim, MPH, PhD, Principal Investigator
- University of Illinois at Chicago,Chicago
Veronica Stanton, DNP, RN, CPNP-PC, Research Coordinator
Jeffrey Loeb, MD, PhD, Principal Investigator