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New study seeks clues to rare brain disorder

NCT ID NCT01425944

Knowledge-focused Sponsor: Hugo W. Moser Research Institute at Kennedy Krieger, Inc. Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing This study
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study looks at 600 people with Sturge-Weber syndrome, a rare condition that affects the brain and skin. Researchers want to find out what causes the disease to get worse over time. They will study genes, blood vessel changes, and substances in urine to better predict and manage the condition.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 600 people

The number the study aims to enrol. It can still change while the study runs.

Started

Sep 2010

Expected to finish

Feb 2027

An estimate. End dates often move.

Lead sponsor

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

For Aim 1, the population will be subjects with Sturge-Weber Syndrome and diagnosed brain involvement. There will be a separate group made up of family members of those with Sturge-Weber syndrome brain involvement to have as a control for the urine portion of Aim 1. For the optical coherence tomography (OCT) portion of Aim 1, the population will be subjects with Sturge-Weber Syndrome eye involvement. For Aim 2, the population will be subjects that have Sturge-Weber Syndrome with brain involvement. For Aim 3, the population will be subjects with Sturge-Weber Syndrome, diagnosed brain involvement, and V1 distribution Port-Wine Stain.

Ages

1 month and older

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

Show 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: For Aim 1: For main sample: * Sturge-Weber syndrome * Diagnosed brain Involvement For Control: * Family member of participating SWS patient For OCT: * Sturge-Weber syndrome eye involvement For Aim 2: * Sturge-Weber syndrome * Diagnosed Brain Involvement For Aim 3: * Sturge-Weber syndrome * Diagnosed brain Involvement * Port-Wine Stain in V1 and/or V2 areas of face. Exclusion Criteria: * Not Diagnosed with Sturge-Weber syndrome with brain Involvement (or eye involvement for OCT) For Aim 1: * Family member must not have certain medical conditions. A list will be provided before consent is given. For Aim 3: * Not Diagnosed with Sturge-Weber syndrome with brain Involvement * No Port-Wine Stain

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Conditions

The condition(s) this trial relates to.

Sturge-Weber syndrome

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Sturge-Weber syndrome

Contacts and locations

Locations

  • Baylor College of Medicine/Texas Children's Hospital

    Houston, Texas, 77030, United States

  • Cincinnati Children's Hospital

    Cincinnati, Ohio, 45229, United States

  • Kennedy Krieger Institute

    Baltimore, Maryland, 21205, United States

  • Nationwide Children's Hospital

    Columbus, Ohio, 43205, United States

  • New York University

    New York, New York, 10016, United States

  • Wayne State University/Children's Hospital of Michigan

    Detroit, Michigan, 48201, United States

  • Wills Eye Institute

    Philadelphia, Pennsylvania, 19107, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.