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

Status: RECRUITMENT CLOSED

Background

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:

California

  • 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

Illinois

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

Maryland

  • 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

Massachusetts

Michigan

New York

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

Ohio

Pennsylvania

  • Thomas Jefferson University – Wills Eye Institute, Philadelphia
    Alex Levin, MD
    Phone: 215-928-3914
    E-mail: alevin@willseye.org

Texas