RECRUITING

Longitudinal Studies to Identify Biomarkers for Sturge-Weber Syndrome

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

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

Quick Facts

Study Start:2021-09-08
Study Completion:2025-06-30
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT04717427

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Yes
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Patients with MRI-documented unilateral or bilateral leptomeningeal angiomas with or without neurological symptoms including seizures, headaches, and stroke-like episodes
  2. * Patients of any age
  3. * Availability of longitudinal clinical and imaging data from all patient EHR records
  4. * Consent to being followed prospectively throughout the course of the study
  5. * Willing to provide blood samples
  6. * Inclusion criteria to trigger entry into Aim 1B: severe seizures, headaches, or stroke-like episodes
  1. * Persons without physician diagnosed SWS
  2. * Persons unwilling to sign informed consent

Contacts and Locations

Study Contact

Jeffrey Loeb, M.D., Ph.D.
CONTACT
(312)-996-6496
jaloeb@uic.edu

Principal Investigator

Jeffrey Loeb, MD, PhD
PRINCIPAL_INVESTIGATOR
University of Illinois at Chicago

Study Locations (Sites)

University of California San Francisco
San Francisco, California, 94143
United States
University of Illinois At Chicago
Chicago, Illinois, 60607
United States
Kennedy Krieger Institute
Baltimore, Maryland, 21213
United States
Boston Children's Hospital
Boston, Massachusetts, 02115
United States
Wayne State University
Detroit, Michigan, 48202
United States
University of New Mexico
Albuquerque, New Mexico, 87106
United States
Cincinnati Children's Hospital
Cincinnati, Ohio, 45229
United States
Nationwide Children's Hospital
Columbus, Ohio, 43205
United States

Collaborators and Investigators

Sponsor: University of Illinois at Chicago

  • Jeffrey Loeb, MD, PhD, PRINCIPAL_INVESTIGATOR, University of Illinois at Chicago

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2021-09-08
Study Completion Date2025-06-30

Study Record Updates

Study Start Date2021-09-08
Study Completion Date2025-06-30

Terms related to this study

Additional Relevant MeSH Terms

  • Sturge-Weber Syndrome