NCT01425944Active, not recruiting
Innovative Approaches to Gauge Progression of Sturge-Weber Syndrome
The Brain Vascular Malformations Clinical Research Network: Predictors of Clinical Course, Project 2: Innovative Approaches to Gauge Progression of Sturge-Weber Syndrome
Source: ClinicalTrials.gov · Last updated 2 Mar 2026
Brief summary (registry, in English)
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.
- Status (registry)
- Active, not recruiting
- Study type
- Observational
- Enrollment
- 600 (estimated)
- First submitted
- 29 Aug 2011
- Start date
- 1 Sept 2010
- Primary completion date
- 31 Dec 2025
- Lead sponsor
- Hugo W. Moser Research Institute at Kennedy Krieger, Inc.
- NCT number
- NCT01425944
What you commit to
- Study type: Observational
- Planned participants: 600
- From 1 Sept 2010 to the primary completion date, 31 Dec 2025
- 7 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 illness
- 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
Other
- No Port-Wine Stain
Who the study is looking for
- 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.
Age in the registry: 1 month to - · Sex: All · Accepts healthy volunteers
Sites (7)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Kennedy Krieger Institute Coordinator of this site? Confirm its status | Baltimore | United States | Unknown status |
| Cincinnati Children's Hospital Coordinator of this site? Confirm its status | Cincinnati | United States | Unknown status |
| Nationwide Children's Hospital Coordinator of this site? Confirm its status | Columbus | United States | Unknown status |
| Wayne State University/Children's Hospital of Michigan Coordinator of this site? Confirm its status | Detroit | United States | Unknown status |
| Baylor College of Medicine/ Texas Children's Hospital Coordinator of this site? Confirm its status | Houston | United States | Unknown status |
| New York University Coordinator of this site? Confirm its status | New York | United States | Unknown status |
| Wills Eye Institute Coordinator of this site? Confirm its status | Philadelphia | United States | Unknown status |
This page is information, not medical advice. Discuss any trial with your doctor.