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Although Sturge-Weber syndrome can be managed, there is no cure. Research for Sturge-Weber syndrome (as with all rare diseases) is often hampered by the lack of investigators interested in researching it or from an unavailability of tissue samples or the difficult to find clinical trial participants necessary to conduct a study.
Current Studies Seeking Participants
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. For a copy of the IRB, patient consent form or further information, please contact the study investigators.
The Brain Vascular Malformation Consortium (BVMC) seeks your participation today.
Be a Champion for a Cure! Please call the SWF today 800-627-5482 to see if you are eligible to participate in the 3 aims for the Sturge-Weber project and to find a center nearest you. To learn more about the BVMC, please visit:
http://www.sturge-weber.org/research/bvmc.html
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).
Participate in Laser Study: Dr. Stuart Nelson of the University of California, Irvine Beckman Laser Institute is seeking subjects with port wine stain birthmarks who are interested in participating in innovative combined laser and drug treatment research to remove these birthmarks. Eligible subjects will receive study-related treatments and follow-up care free of charge. Contact: Andrea Giancarli, (949) 824-4269,
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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:
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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:
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