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The Registry - Information

Families & Researchers Working Together to Advance Understanding of Williams Syndrome

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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.

  • Medical Records.

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 tells you about 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
 

Understanding Research

Why is research so important? What is it?

Read more...

FAQs

Many families have questions about the Registry.

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Security & Privacy

The Registry offers state-of-the-art protection for your privacy and security 
 

Join Us

If you think you are interested in joining, get started here!

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