Trial Information

The Brain Vascular Malformations Clinical Research Network: Predictors of Clinical Course, Project 2: Innovative Approaches to Gauge Progression of Sturge-Weber Syndrome

This study is one of three projects of an NIH Rare Disease Clinical Research Consortium
focused on brain blood vessel malformations in three different rare diseases. The focus of
this project is on Sturge-Weber Syndrome.

We plan to improve the future understanding and treatment of Sturge-Weber Syndrome by 1)
establishing a national consortium database which will gather lager amounts of clinical data
and serve indirectly as a registry to foster future clinical trials, 2) determine the
usefulness of urine vascular biomarkers, and 3) try to identify the hypothesized somatic
mutation possibly causing SWS using DNA arrays.