Actively Recruiting
Integrated Longitudinal Studies to Identify Biomarkers and Therapeutic Strategies for Sturge-Weber Syndrome
Led by University of Illinois at Chicago · Updated on 2024-09-19
250
Participants Needed
8
Research Sites
N/A
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
This research focuses on individuals with 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 clinical data, brain imaging, and blood biomarkers over time to better understand SWS. Researchers want to identify biomarkers that signal worsening symptoms and explore inflammatory changes in patients with severe neurological signs. Participants will be involved in a longitudinal study collecting past and ongoing clinical information, imaging results, and blood samples. The study includes patients who have MRI-confirmed vascular brain abnormalities related to SWS. Blood samples will be taken initially and again during neurological symptom episodes, with follow-up samples six months later or beyond if symptoms persist. Imaging data will be gathered from all participating centers and analyzed alongside detailed treatment and symptom records. Those enrolled will provide consent for blood draws and be followed prospectively, with their clinical and imaging data collected over time. Researchers will monitor disease progression for up to four years, focusing on natural history and symptom changes. The study will store blood samples for detailed analysis of angioma and inflammatory markers. Participants may be asked to provide multiple blood samples if they experience severe neurological events during the study period.
CONDITIONS
Brief 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 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
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
Duration - Up to 4 years
Participants who have MRI-documented leptomeningeal angiomas are observed over time to collect clinical and imaging data.
Ongoing data collection during routine clinical visits
Duration - Throughout the study period
MRI scans are collected at baseline and during acute neurological symptom exacerbations such as seizures, headaches, or stroke-like episodes.
Baseline MRI and additional MRI scans as symptoms occur
Duration - Throughout the study period
Blood samples are collected at enrollment, during neurological symptom events, and 6 months or later after the event to analyze biological markers.
Up to 3 blood sample collections per participant depending on symptoms
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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