Identifying biomarkers for Sturge-Weber Syndrome
Integrated Longitudinal Studies to Identify Biomarkers and Therapeutic Strategies for Sturge-Weber Syndrome
This study is trying to find specific markers in blood and brain scans that can help us better understand Sturge-Weber Syndrome and improve future treatments for those affected.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 250 (estimated) |
| Sex | All |
| Sponsor | University of Illinois at Chicago Academic / other |
| Locations | 8 sites (San Francisco, California and 7 other locations) |
| Trial ID | NCT04717427 on ClinicalTrials.gov |
What this trial studies
This study aims to integrate longitudinal clinical data, radiological data, and blood biomarkers from individuals diagnosed with Sturge-Weber Syndrome (SWS). It will develop a comprehensive database to track clinical symptoms and treatments over time, while also examining MRI data to identify changes associated with severe neurological symptoms. Blood samples will be collected to analyze inflammatory changes in patients experiencing acute episodes. The goal is to enhance understanding of SWS and identify potential targets for future clinical trials.
Who should consider this trial
Good fit: Ideal candidates include patients of any age with MRI-documented Sturge-Weber Syndrome and a history of neurological symptoms such as seizures or headaches.
Not a fit: Patients without a physician-diagnosed Sturge-Weber Syndrome or those unwilling to provide informed consent may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could lead to improved diagnosis and treatment strategies for patients with Sturge-Weber Syndrome.
How similar studies have performed: While there have been studies focusing on biomarkers in other neurological conditions, this specific approach to Sturge-Weber Syndrome is relatively novel.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * 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 Exclusion Criteria: * Persons without physician diagnosed SWS * Persons unwilling to sign informed consent
Where this trial is running
San Francisco, California and 7 other locations
- University of California San Francisco — San Francisco, California, United States (Recruiting)
- University of Illinois At Chicago — Chicago, Illinois, United States (Recruiting)
- Kennedy Krieger Institute — Baltimore, Maryland, United States (Recruiting)
- Boston Children's Hospital — Boston, Massachusetts, United States (Recruiting)
- Wayne State University — Detroit, Michigan, United States (Recruiting)
- University of New Mexico — Albuquerque, New Mexico, United States (Recruiting)
- Cincinnati Children's Hospital — Cincinnati, Ohio, United States (Recruiting)
- Nationwide Children's Hospital — Columbus, Ohio, United States (Recruiting)
Study contacts
- Principal investigator: Jeffrey Loeb, MD, PhD — University of Illinois at Chicago
- Study coordinator: Jeffrey Loeb, M.D., Ph.D.
- Email: jaloeb@uic.edu
- Phone: (312)-996-6496
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.