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The Registry - Researcher Information

Families & Researchers Working Together to Advance Understanding of Williams Syndrome

For Researchers

The 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 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.

Meet the Staff

Learn about those involved. 

Registry Tools

The Registry aims to make research easier. 
Check out the tools designed to help you.

FAQs

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