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NCT04717427Completed

Longitudinal Studies to Identify Biomarkers for Sturge-Weber Syndrome

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

Source: ClinicalTrials.gov · Last updated 7 Jul 2026

Brief summary (registry, in English)

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.

Status (registry)
Completed
Study type
Observational
Enrollment
161 (actual)
First submitted
15 Jan 2021
Start date
8 Sept 2021
Primary completion date
30 Jun 2025
Lead sponsor
University of Illinois Chicago
NCT number
NCT04717427

What you commit to

  • Study type: Observational
  • Participants enrolled: 161
  • From 8 Sept 2021 to the primary completion date, 30 Jun 2025
  • 8 sites in 1 country
  • Visits and tests: ask the trial team, the registry does not list them

Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.

Who cannot take part

Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.

Other

  • Persons without physician diagnosed SWS
  • Persons unwilling to sign informed consent

Who the study is looking for

  • 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

Sex: All · Accepts healthy volunteers

Full criteria on ClinicalTrials.gov

Sites (8)

Sites in registry order. Pick your city on the disease page to sort them by distance.

SiteCityCountrySite status
University of New Mexico
Coordinator of this site? Confirm its status
AlbuquerqueUnited StatesUnknown status
Kennedy Krieger Institute
Coordinator of this site? Confirm its status
BaltimoreUnited StatesUnknown status
Boston Children's Hospital
Coordinator of this site? Confirm its status
BostonUnited StatesUnknown status
University of Illinois at Chicago
Coordinator of this site? Confirm its status
ChicagoUnited StatesUnknown status
Cincinnati Children's Hospital
Coordinator of this site? Confirm its status
CincinnatiUnited StatesUnknown status
Nationwide Children's Hospital
Coordinator of this site? Confirm its status
ColumbusUnited StatesUnknown status
Wayne State University
Coordinator of this site? Confirm its status
DetroitUnited StatesUnknown status
University of California San Francisco
Coordinator of this site? Confirm its status
San FranciscoUnited StatesUnknown status

This page is information, not medical advice. Discuss any trial with your doctor.