Longitudinal Studies to Identify Biomarkers for Sturge-Weber Syndrome

Conditions

• Sturge-Weber Syndrome

Eligibility Criteria

Sex

ALL

Age

N/A - N/A

Healthy Volunteers

Accepted

Study Details

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.

Key Dates

Start date

Sep 8, 2021

Status verified

Jun 2024

Primary completion

Jun 30, 2025

Completion

Jun 30, 2025

Study Design

Enrollment

250 participants (estimated)

Primary Outcome Measure

Natural history of disease progression. [ Time Frame: 4 years ]

Central Contacts

• Jeffrey Loeb, M.D., Ph.D.
  (312)-996-6496
  [email protected]

Locations (8)

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