Longitudinal Studies to Identify Biomarkers for Sturge-Weber Syndrome

Completed

Conditions studied: Sturge-Weber Syndrome

In brief

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: 1. To integrate longitudinal clinical data, radiological data, and blood biomarkers of Sturge-Weber syndrome patients. 2. Identify plasma and imaging biomarkers sensitive to exacerbation of clinical symptoms including seizures, headaches, or stroke-like episodes. 3. For enrolled patients who present with severe neurological symptoms screen blood samples for inflammatory changes. The target enrollment for this study is 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.

Key facts

Study ID

NCT04717427

Run by

University of Illinois at Chicago

People needed

161

Starts

2021-09-08

Expected to finish

2025-06-30

Last updated by the study team

2026-07-07

Who can join

Age: any. Sex: any. Healthy volunteers: accepted.

You may qualify if…

• 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

You may not qualify if…

• Persons without physician diagnosed SWS
• Persons unwilling to sign informed consent

Where it is running

• University of California San Francisco — San Francisco, California, United States
• University of Illinois At Chicago — Chicago, Illinois, United States
• Kennedy Krieger Institute — Baltimore, Maryland, United States
• Boston Children's Hospital — Boston, Massachusetts, United States
• Wayne State University — Detroit, Michigan, United States
• University of New Mexico — Albuquerque, New Mexico, United States
• Cincinnati Children's Hospital — Cincinnati, Ohio, United States
• Nationwide Children's Hospital — Columbus, Ohio, United States

Full record on ClinicalTrials.gov

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