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The Registry - Researcher Information

Families and Researchers Working Together to Find Answers

For Researchers

The WS Registry was created for the WSA to promote Williams syndrome research, to collect natural history information, and to make it easier for researchers to identify potential study subjects. As a researcher member of the Registry, you can take advantage of Registry functionality designed expressly for you.
 

Why use the Registry?

 
The WSA encourages its membership to join the Registry and to participate only in studies announced through the Registry. The WSA hopes that all Williams syndrome researchers will use the WS Registry to recruit for their studies.
 
With a Registry researcher account you can:
 
  • Access a large group of individuals with Williams syndrome.
  • Review information provided to the Registry by parents/guardians.
  • Recruit from the Registry membership.
  • Tailor your recruitment by age, geography, or gender.
  • Tailor your recruitment by particular medical/behavioral/developmental concerns.
  • Tailor your recruitment for a WSA conference or convention.
  • Receive contact information for all families indicating interest in your study.
  • Request selected (redacted) medical records, or information obtained from these medical records
  • Take advantage of Registry functionality, which is online and available in real time.
  • Potentially collaborate to run studies online through the WS Registry.

 

 

 

Meet the Staff

Learn about those involved. 

Registry Tools

Why is research so important?

FAQs

Many researchers have the same 
questions about the Registry. 
If you think you are interested 
in joining, get started here!