Integrated Longitudinal Studies to Identify Biomarkers and Therapeutic Strategies for Sturge-Weber Syndrome

Status: Recruiting
Location: See all (8) locations...
Study Type: Observational
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 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.

Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: t
View:

• 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

Locations
United States
California
University of California San Francisco
RECRUITING
San Francisco
Illinois
University of Illinois At Chicago
RECRUITING
Chicago
Massachusetts
Boston Children's Hospital
RECRUITING
Boston
Maryland
Kennedy Krieger Institute
RECRUITING
Baltimore
Michigan
Wayne State University
RECRUITING
Detroit
New Mexico
University of New Mexico
RECRUITING
Albuquerque
Ohio
Cincinnati Children's Hospital
RECRUITING
Cincinnati
Nationwide Children's Hospital
RECRUITING
Columbus
Contact Information
Primary
Jeffrey Loeb, M.D., Ph.D.
jaloeb@uic.edu
(312)-996-6496
Time Frame
Start Date: 2021-09-08
Estimated Completion Date: 2025-06-30
Participants
Target number of participants: 250
Sponsors
Collaborators: Nationwide Children's Hospital, Boston Children's Hospital, Sturge-Weber Foundation, Children's Hospital Medical Center, Cincinnati, Hugo W. Moser Research Institute at Kennedy Krieger, Inc., Duke University, Wayne State University, University of California, San Francisco
Leads: University of Illinois at Chicago

This content was sourced from clinicaltrials.gov