Active — Not RecruitingNot Applicable

Innovative Approaches to Gauge Progression of Sturge-Weber Syndrome

United States600 participantsStarted 2010-09

Plain-language summary

This study has three aims that hope to expand the knowledge on the cause of Sturge-Weber Syndrome (SWS) and improve clinical care of Sturge-Weber Syndrome patients.

Who can participate

Age range

1 Month

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

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

Questions worth asking your doctor

Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.

1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?

Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.

Questions for the trial coordinator

The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.

1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?

A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.

What they're measuring

Aim 1

Timeframe: All 5 years

Aim 2

Timeframe: All 5 years

Aim 3

Timeframe: All 5 years

Trial details

NCT IDNCT01425944

SponsorHugo W. Moser Research Institute at Kennedy Krieger, Inc.

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2025-12

View on ClinicalTrials.gov More Sturge-Weber Syndrome trials

Who can participate

Age range

1 Month

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.