The SWF funded and launched the online Sturge-Weber International Registry in order to accelerate translational efforts (moving from basic laboratory research to meaningful health outcomes, such as therapies and treatments) related to Sturge-Weber and birthmarks. The registry contains consented clinical data which have been collected over years of effort -  in some cases since 1987. These data have been instrumental in engaging clinicians and scientists in order to study the syndrome, and have been acknowledged in highly respected medical journals. The registry data were also a key factor that enabled many researchers to obtain National Institutes of Health (NIH) grant awards.

Why do we need a Registry?

The Sturge-Weber International Registry is important for better characterizing and understanding the syndrome and the impact of birthmarks. By creating a Registry member profile, you are helping to define the diversity of the Sturge-Weber syndrome and birthmarks among our worldwide members. Members of the Registry have the opportunity to assist in the development process and are provided with the most up-to-date information about research studies and clinical trials seeking participants. Registry members also have the ability to explore the collective results and learn more about how they compare to other cases of Sturge-Weber syndrome. The registry provides valuable information for families and doctors to make the best possible care decisions. It will be important to help researchers decide which are the most significant challenges are to address in SWS. The Registry will also help scientists find out if there are any SWS affected individuals who might be a good match for their research studies.