Scientists hunt for clues to tame Sturge-Weber syndrome
NCT ID NCT04717427
First seen Jul 07, 2026 · Last updated Jul 08, 2026 · Updated 1 time
Summary
This study follows people with Sturge-Weber syndrome, a rare condition that can cause seizures, strokes, and brain damage. Researchers collect medical records, brain scans, and blood samples over time to spot patterns linked to worsening symptoms. The goal is to find biological markers that could lead to better treatments and future clinical trials.
What this could mean
Our plain-language read of the trial. This is informational only, not medical advice or a prediction.
- What this could lead to
- If successful, this research could identify early warning signs of symptom flare-ups and point toward new treatment targets for Sturge-Weber syndrome.
- What could go wrong
- This is an observational study, not a treatment trial. It may not directly lead to new therapies, and findings may take years to translate into clinical practice.
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Study facts
What this study's own registry entry says, in plain language.
- Participants
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161 people
The number who actually took part.
- Started
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Sep 2021
- Finished
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Jun 2025
- Lead sponsor
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Other sponsor
The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
Who is studied
Assemble a cohort of 250 patients with standardized phenotyping/diagnosis to collect standardized longitudinal clinical and radiological data and obtain blood samples at enrollment. We anticipate 25% of 250 enrolled patients will have serious neurological symptoms.
- Ages
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Children (under 18), adults (18 to 64) and older adults (65 and over)
- Sex
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Anyone
- Healthy volunteers
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Accepted
You do not need to have the condition being studied to take part.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
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
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
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Boston Children's Hospital
Boston, Massachusetts, 02115, United States
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Cincinnati Children's Hospital
Cincinnati, Ohio, 45229, United States
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Kennedy Krieger Institute
Baltimore, Maryland, 21213, United States
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Nationwide Children's Hospital
Columbus, Ohio, 43205, United States
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University of California San Francisco
San Francisco, California, 94143, United States
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University of Illinois At Chicago
Chicago, Illinois, 60607, United States
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University of New Mexico
Albuquerque, New Mexico, 87106, United States
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Wayne State University
Detroit, Michigan, 48202, United States
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