6202: Innovative approaches to gauge progression of Sturge-Weber Syndrome



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:

  1. 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.

Targeted Enrollment

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
    Phone: 415-502-2151
    E-mail: yuanbo.holley@ucsf.edu
    Helen Kim, MPH, PhD, Principal Investigator
    E-mail: helen.kim2@ucsf.edu


  • University of Illinois at Chicago, Chicago
    Jeffrey Loeb, MD, PhD
    Phone: 312-996-1757
    E-mail: jaloeb@uic.edu


  • Kennedy Krieger Institute, Baltimore
    Teresa Williams, Research Coordinator
    Phone: 513-636-2569
    Anne Comi, MD, Prinicipal Investigator
    Phone: 443-923-9127
    E-mail: comi@kennedykrieger.org



New York

  • University of Rochester, New York
    Alex V. Levin, MD, MHSc, FAAP, FAAO, FRCSC
    For patient related matters: Phone 585-275-4141, Fax 585-276-0324
    For all other matters: Phone 585-276-5036, Fax 585-276-2517
    E-mail: alex_levin@urmc.rochester.edu

North Carolina

  • University of North Carolina at Chapel Hill, Chapel Hill
    Hae Won Shin, MD
    Phone: 984-974-4401
    E-mail: shinhw@neurology.unc.edu