Actively Recruiting

All Genders
Healthy Volunteers
NCT04717427

Longitudinal Studies to Identify Biomarkers 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

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.

CONDITIONS

Official Title

Longitudinal Studies to Identify Biomarkers for Sturge-Weber Syndrome

Who Can Participate

All Genders
Healthy Volunteers

Eligibility Criteria

Eligible

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
Not Eligible

You will not qualify if you...

  • Persons without physician diagnosed Sturge-Weber Syndrome
  • Persons unwilling to sign informed consent

AI-Screening

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Complete this quick 3-step screening to check your eligibility

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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

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Research Team

J

Jeffrey Loeb, M.D., Ph.D.

CONTACT

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

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