Families and Researchers Working Together to Find Answers
By now, you probably know the WS Registry is an online tool to help everyone learn about Williams syndrome and alert families to important research opportunities with the hopes of identifying new treatments. How does the WS Registry achieve these goals? What will you be asked to do? What does the WS Registry do with your information? Read on to learn more!
Looking to head to the “Join Now” page to get started? Click here
How does the WS Registry achieve its goals?
What will you be asked to do?
After you join the WS Registry, you will be asked to provide some information about your family member with Williams syndrome. You’ll be asked to:
What does the WS Registry do with your information?
- The WS Registry works hard to organize the information you have shared (in surveys and medical records) about your family member with Williams syndrome. Your information is safely stored on a HIPAA-compliant secure server. Learn more here
- The WS Registry combines the information you provided with the information hundreds of other Williams syndrome families have provided.
The information collected from all WS Registry members is then used in the following ways:
- To tailor which new Williams syndrome study opportunities are appropriate for you (i.e. if your child has high blood pressure, the WS Registry will tell you about a new blood pressure study).
- To prepare anonymous subsets of information for qualified Williams syndrome researchers to speed up their research.
- To report back to everyone on any interesting findings!
Meet the Staff
Learn about those involved.
Why is research so important?
Many researchers have the same
questions about the Registry.
If you think you are interested
in joining, get started here!