About The Sturge-Weber International Registry

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 (that was previously stored in a server based software platform) collected in some cases since 1987. This data has been instrumental in engaging clinicians and scientists to study the syndrome and been acknowledged in highly respected medical journals. The data was also a key factor in many researchers obtaining National Institutes of Health (NIH) grant awards.

Why do we need a Registry?

The Sturge-Weber International Registry is important for characterizing and understanding the syndrome better 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 as members 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 what 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.

Collecting information from SWS affected individuals is very important, but protecting the privacy of people affected by SWS and birthmarks is also extremely important. In order to protect your privacy, Patient Crossroads (the company that designed the registry software) has designed many safeguards and stores the information on a HIPAA compliant server. Your child’s information will be “de-identified” so no one who looks at the data can identify you or your child. The information will be assigned a code. If a researcher is interested in learning more about you or your child, the researcher will ask the Registry coordinator to contact you. A scientist will not be able to receive any identifying information about you or your child unless you give explicit consent for you or your child’s identity to be released to that researcher.