The SWF is in no way affiliated with these studies. You should only decide to participate in a study once you have learned about the study, have had all of your questions answered, have been thoroughly informed about the study and are comfortable with its requirements and your ability to complete them. We encourage you to inform your personal physician before participating in any studies. Notice of the study is being offered for informational purposes and should not be seen as an endorsement of the Study by The SWF. For a copy of the IRB, patient consent form or further information, please contact the study investigators.

Sturge-Weber Syndrome Center:
Low-dose Aspirin Treatment for Sturge-Weber Syndrome (SWS) Survey

Hunter Nelson Sturge-Weber Center
Kennedy Krieger Institute and Johns Hopkins Hospital Principal Investigator:
Anne Comi, MD Protocol NA_00006945

People with SWS who have and have not taken low-dose aspirin are invited to participate in a research survey. This research study is being done by Dr. Comi and other faculty at the Hunter Nelson Sturge-Weber Syndrome Center. The survey is web-based, and no names or other identifying information, including your URL, will be collected. Your participation implies consent. With your help, we hope to improve treatment for people with Sturge-Weber Syndrome. It takes approximately 15-20 minutes to complete the study. There are minimal risks and no medical benefits for participating.

To fill out this survey, please visit the following web site:
http://derm.med.jhmi.edu/sturgeweber/

The Beckman Laser Institute and Medical Clinic is seeking participants for a laser therapy study. The purpose of this research study is to improve Port Wine Stain (PWS) treatment in response to laser therapy. It is unknown whether or not a shorter (577 nm) wavelength (different color of light) pulsed dye (PDL) laser treatment will improve PWS fading. This study will give information on whether or not the shorter (577 nm) wavelength PDL treatment will improve PWS fading.

Lead Researcher

J. Stuart Nelson, M.D., Ph.D.
Departments of Surgery and Biomedical Engineering
(949) 824-7997
Beckman Laser Institute and Medical Clinic
UCIMC Surgery Laser Clinic

You are eligible to participate in this study if you have:

1. PWS suitable for comparison testing
2. Age > 6 months of age; minor will be accompanied in the room by parent or guardian during laser treatment
3. Apparent good health as documented by medical history
4. Ability to understand and carry out subject instructions

This study will include approximately 18 subjects and will involve approximately 1.75 hrs or 105 minutes of your time over the next 8 weeks. You are not eligible to participate in this study if you have:

1. History of sunlight sensitivity or skin cancer
2. Any therapy within the previous two months to the proposed PWS treatment sites
3. Inability to understand and carry out instructions

Participate in Laser Study: Dr. Kristen Kelly of the University of California, Irvine Dept. of Dermatology and the Beckman Laser Institute is seeking subjects with port wine stain birthmarks who are interested in participating in innovative laser based treatment research to remove these birthmarks. Subjects must have a port wine stain birthmark on a body area other than the face, be 18 years or older and can not be on medication which makes them sensitive to light or increases bleeding including aspirin or coumadin. Eligible subjects will receive study-related treatments and follow-up care free of charge. Contact: Montana Compton, (949) 824-9265 or mocomton@uci.edu

Wayne State P.E.T Center: PET is a powerful non-invasive method that helps to localize epileptic brain regions. It is especially helpful when structural neuroimaging (CT, MRI) and/or electroencephalography (EEG) do not provide a consistent information about epileptogenic areas. The Center can evaluate the cerebral glucose metabolic pattern in children with SWS using FDG PET scans, which may predict epileptogenic foci and cognitive function. The Children's Hospital/Wayne State University group has an NIH grant on Sturge-Weber syndrome that allows these scans as well as an MRI scan and neuropsychological testing to be done free of charge on a yearly basis for 3 years. For additional information, please call: Dr. Harry Chugani (313-993-2867) or Dr. Csaba Juhasz (313-966-5136).

Multidisciplinary Protocol to Address the Pathophysiology of Sturge-Weber Syndrome: Infants and children with Sturge-Weber syndrome or its variants: You are invited to participate in a study of medical procedures that may be useful in understanding Sturge-Weber syndrome. People who are diagnosed with SWS or its variants may be eligible to join this study. Infants suspected of having SWS based on a typical facial port-wine stain may also be eligible to join. The study includes studying past medical records plus several low-risk, routine medical procedures. These procedures may include EEG, blood and/or urine testing, skin biopsy, neuropsychological testing, fundus (eye) photographs, and ultrasound of the eye and head. For additional information, please call: Dr. Anne Comi at 443-923-9150 Or email: comi@kennedykrieger.org

Noninvasive Imaging and Functional Correlation of Intracranial Pial Angiomatosis in Patients With Sturge-Weber Syndrome: Children (age 8 and greater) and adults with Sturge-Weber syndrome You are invited to participate in an imaging study of the brain to see how the vascular structures and blood flow are changed by Sturge-Weber syndrome. This study involves having a MRI with intravenous contrast injection performed at the Johns Hopkins Hospital. The MRI study takes 60 minutes. You will receive a MRI report at no cost. For additional information, please call: Dr. Anne Comi at 443-923-9150 Or email: comi@kennedykrieger.org