Actively Recruiting
Longitudinal Studies to Identify Biomarkers and Potential Treatments for Sturge-Weber Syndrome
Led by University of Illinois at Chicago · Updated on 2024-09-19
250
Participants Needed
8
Research Sites
198 weeks
Total Duration
On this page
Sponsors
U
University of Illinois at Chicago
Lead Sponsor
U
University of California, San Francisco
Collaborating Sponsor
AI-Summary
What this Trial Is About
Researchers are studying Sturge-Weber Syndrome (SWS), a condition that can affect the brain and cause seizures, stroke-like episodes, and neurological problems. The study aims to combine long-term clinical information, brain imaging, and blood tests from people with SWS. The goal is to better understand the disease, find markers linked to symptom worsening, and guide future treatment trials. Participants with SWS will have their medical records reviewed to collect past and ongoing clinical data, including symptoms and treatments. Brain MRI scans will be gathered at the start and repeated if participants experience worsening symptoms like seizures, headaches, or stroke-like episodes. Blood samples will be collected from all participants, with extra samples taken during and after severe neurological events to analyze inflammation and other markers. During the study, participants will be followed over time to track their health and symptoms. Researchers will gather detailed clinical information, imaging data, and blood test results to identify patterns related to symptom changes. The study will monitor participants for up to four years to learn more about how the disease progresses and to find potential targets for new treatments.
CONDITIONS
Official Title
Longitudinal Studies to Identify Biomarkers for Sturge-Weber Syndrome
Who Can Participate
Eligibility Criteria
You may qualify if you...
- 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
- Severe seizures, headaches, or stroke-like episodes to trigger entry into Aim 1B
You will not qualify if you...
- Persons without physician diagnosed Sturge-Weber Syndrome
- Persons unwilling to sign informed consent
AI-Screening
AI-Powered Screening
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Trial Site Locations
Total: 8 locations
1
University of California San Francisco
San Francisco, California, United States, 94143
Actively Recruiting
2
University of Illinois At Chicago
Chicago, Illinois, United States, 60607
Actively Recruiting
3
Kennedy Krieger Institute
Baltimore, Maryland, United States, 21213
Actively Recruiting
4
Boston Children's Hospital
Boston, Massachusetts, United States, 02115
Actively Recruiting
5
Wayne State University
Detroit, Michigan, United States, 48202
Actively Recruiting
6
University of New Mexico
Albuquerque, New Mexico, United States, 87106
Actively Recruiting
7
Cincinnati Children's Hospital
Cincinnati, Ohio, United States, 45229
Actively Recruiting
8
Nationwide Children's Hospital
Columbus, Ohio, United States, 43205
Actively Recruiting
Research Team
J
Jeffrey Loeb, M.D., Ph.D.
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
Frequently Asked Questions
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