Families and Researchers Working Together to Find Answers
About the WS Registry
The WS Registry is developed for, and owned by, the WSA. It collects and organizes information that parents or legal guardians provide about their family member with Williams syndrome. It also connects persons with Williams syndrome and their families to doctors and scientists currently researching the condition.
Through the WS Registry, researchers can:
- Peruse de-identified summaries derived from parent/guardian provided information about their family member with Williams syndrome
- Request copies of, or information from, medical records that have been provided to the WS Registry
- Work with the WS Registry staff to recruit potential study participants for your studies (these may be ongoing or conducted at a WSA convention)
Who Can Join
The WS Registry is for researchers and doctors interested in studying Williams syndrome. All qualified researchers (doctors, scientists, psychologists, developmental specialists, etc.) may join.
If you have questions, contact the WS Registry Team: 617-643-3190 or WSRegistry@partners.org