Research

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/

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

Other Vascular Birthmark Related Research:

The Effect of Facial Hemangiomas on Psycho-Social Development

Elissa Uretsky- Rifkin, M.Ed. CMHC is conducting this survey for Hemangioma ONLY.
This study has been approved by the Human Studies Committee at The Washington University Medical Center in St. Louis, MO. If you are 14 years old or over and would be willing to answer three short questionnaires, please volunteer for this research study. This study is investigating the psycho-social impact of growing up with an hemangioma on the face.

You must meet the following criteria to be in the study:

• Your birthmark must have been diagnosed as an hemangioma (either deep, superficial or mixed), NOT a Port-Wine Stain or other type of malformation.
• You did not receive any treatment prior to age 14 to remove, lighten or reduce the Hemangioma.
• It must have covered at least 10% of the face (size of an egg) and been visible to other people.
• You must have attended a public or private school. (not home schooled)
• You must be able to fill out the questionnaire without help from another person.
• All participants must sign a consent form, and if you are under 18 years of age a parent or legal guardian must sign and approve your participation in the study.

All information is strictly confidential. Your answers will be sent to the scoring coordinator anonamously (without your identity disclosed).

Elissa Uretsky- Rifkin, M.Ed. CMHC
Clinical Mental Health Specialist
Principal Investigator
studyvb@aol.com