Status:
ACTIVE_NOT_RECRUITING
Innovative Approaches to Gauge Progression of Sturge-Weber Syndrome
Lead Sponsor:
Hugo W. Moser Research Institute at Kennedy Krieger, Inc.
Collaborating Sponsors:
National Institutes of Health (NIH)
University of California, San Francisco
Conditions:
Sturge-Weber Syndrome
Eligibility:
All Genders
1+ years
Brief 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.
Detailed Description
This study is one of three projects of an NIH Rare Disease Clinical Research Consortium focused on brain blood vessel malformations in three different rare diseases. The focus of this project is on St...
Eligibility Criteria
Inclusion
- 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
- 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
Key Trial Info
Start Date :
September 1 2010
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
December 1 2025
Estimated Enrollment :
600 Patients enrolled
Trial Details
Trial ID
NCT01425944
Start Date
September 1 2010
End Date
December 1 2025
Last Update
February 18 2025
Active Locations (7)
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1
Kennedy Krieger Institute
Baltimore, Maryland, United States, 21205
2
Wayne State University/Children's Hospital of Michigan
Detroit, Michigan, United States, 48201
3
New York University
New York, New York, United States, 10016
4
Cincinnati Children's Hospital
Cincinnati, Ohio, United States, 45229