Families & Researchers Working Together to Advance Understanding of Williams Syndrome
Webinars were held to walk exisiting and new users through the system. If you weren't able to participate, please view them here. The Registry was created for the WSA to help promote research on Williams syndrome. It does this by:
Collecting information about people with Williams syndrome
The Registry obtains and organizes:
Information you share
Each year, the Registry will ask you to complete a survey about your family member with Williams syndrome.
This survey collects basic medical and developmental information.
Questions are asked yearly so we can see how people with Williams syndrome do over time.
The Registry is interested in collecting medical records from people with Williams syndrome.
Sharing medical records on your family member with Williams syndrome is entirely optional.
Announcing Study Opportunities
The Registry communicates new research opportunities so you can consider participating. You will be notified:
o Rapidly when new studies are announced (whenever possible by email).
o When a new study addresses medical or developmental issues in your family member with WS (i.e. if your child has high blood pressure, the Registry will tell you about a new blood pressure study).
You decide whether or not you want to participate in any study you learn about through the Registry. In other words, the choice to participate is always up to you!
Connecting Families and Researchers
The Registry makes it is easier for researchers to find participants for their studies and for families to learn what research is ongoing. The Registry can also share medical records with qualified researchers.
Meet the Staff
Learn about the professionals who run the Registry
Why is research so important? What is it?
Many families have questions about the Registry.
Security & Privacy
The Registry offers state-of-the-art protection for your privacy and security
If you think you are interested in joining, get started here!