Sturge-Weber Syndrome Center: Ongoing Research Studies
Use of the Atkins diet for children with Sturge-Weber Syndrome
Principal Investigator: Eric Kossoff, MD
You are invited to join a study enrolling children ages 2-18, with proven Sturge-Weber syndrome on an MRI, for a study of the Hopkins modified Atkins diet for treating intractable seizures. Children must have at least one seizure every month and have tried at least 2 anticonvulsant medications to enroll. The study involves 3 visits to Johns Hopkins over 6 months, which must be covered by the parent or insurance. Blood and urine studies will be obtained at the first and last visits.
For more information, contact Dr. Eric Kossoff at 410-614-6054 or ekossoff@jhmi.edu
Multidisciplinary Protocol to Address the Pathophysiology of Sturge-Weber Syndrome
Principal Investigator: Anne Comi, MD
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.
Noninvasive Imaging and Functional Correlation of Intracranial Pial Angiomatosis in Patients With Sturge-Weber Syndrome
Principal Investigator: Doris Lin, MD, PhD
Co-investigators: Dr. Anne Comi & Dr. Peter Barker
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 more information, please call:
Dr. Anne Comi at 443-923-9150
Email: comi@kennedykrieger.org
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/
For additional information about participating in any of the ongoing research studies above, please contact us.
Please see our Completed Research page for abstracts of recently published papers by Center members.
