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Brief Title: Trial of Sirolimus for Cognitive Impairment in Sturge-Weber Syndrome
Official Title: Trial of Sirolimus for Cognitive Impairment in Sturge-Weber Syndrome
Study ID: NCT03047980
Brief Summary: The purpose of this research study is to gain a preliminary understanding of the safety of sirolimus in Sturge-Weber syndrome (SWS) and determine best outcomes to be used to assess the utility of sirolimus for the treatment of cognitive impairments related to Sturge-Weber syndrome.
Detailed Description: Sirolimus will be administered as an adjunct to all current medications. The impact of sirolimus upon cognitive functioning in Sturge-Weber syndrome is the primary outcome measure. This outcome will be assessed using a panel of testing selected based upon extensive experience in testing cognitive function in adults and children with SWS at the Kennedy Krieger Sturge-Weber Center. Changes in a quantitative EEG before and after the trial, Sturge-Weber syndrome clinical neuroscore, port-wine birthmark score, and the impact of sirolimus upon seizures will be assessed.
Minimum Age: 3 Years
Eligible Ages: CHILD, ADULT
Sex: ALL
Healthy Volunteers: No
Kennedy Krieger Institute, Baltimore, Maryland, United States
Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States
Name: Anne M Comi, M.D.
Affiliation: Hugo W. Moser Research Institute at Kennedy Krieger, Inc.
Role: PRINCIPAL_INVESTIGATOR