Status:
RECRUITING
Longitudinal Studies to Identify Biomarkers for Sturge-Weber Syndrome
Lead Sponsor:
University of Illinois at Chicago
Collaborating Sponsors:
University of California, San Francisco
Wayne State University
Conditions:
Sturge-Weber Syndrome
Eligibility:
All Genders
Brief Summary
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 long...
Detailed Description
Aim 1: Develop a longitudinal database of patients with SWS Clinical sites will collect longitudinal data retrospectively on measures of clinical symptoms and medications/treatments for study subjects...
Eligibility Criteria
Inclusion
- Patients with MRI-documented unilateral or bilateral leptomeningeal angiomas with or without neurological symptoms including seizures, headaches, and stroke-like episodes
- Patients of any age
- Availability of longitudinal clinical and imaging data from all patient EHR records
- Consent to being followed prospectively throughout the course of the study
- Willing to provide blood samples
- Inclusion criteria to trigger entry into Aim 1B: severe seizures, headaches, or stroke-like episodes
Exclusion
- Persons without physician diagnosed SWS
- Persons unwilling to sign informed consent
Key Trial Info
Start Date :
September 8 2021
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
June 30 2025
Estimated Enrollment :
250 Patients enrolled
Trial Details
Trial ID
NCT04717427
Start Date
September 8 2021
End Date
June 30 2025
Last Update
September 19 2024
Active Locations (8)
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1
University of California San Francisco
San Francisco, California, United States, 94143
2
University of Illinois At Chicago
Chicago, Illinois, United States, 60607
3
Kennedy Krieger Institute
Baltimore, Maryland, United States, 21213
4
Boston Children's Hospital
Boston, Massachusetts, United States, 02115