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The WS Registry - Information

The fastest way to find answers for persons with a rare disorder, like Williams syndrome, is for families to pool their experiences and knowledge. Joining the WS Registry lets you make your contribution - there is strength (and progress) in numbers.

- Barbara Pober, MD 

 

 

Families and Researchers Working Together to Find Answers

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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?
The WS Registry is designed to make rare-disease research on Williams syndrome easier and faster.  It does this by collecting information about people with Williams syndrome from families just like you. It also helps connect you with doctors and researchers studying Williams syndrome. 
 
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:
Complete yearly surveys about the health and development of your family member with Williams syndrome. Each year you’ll get an alert about a new survey so we can see how your family member with Williams syndrome does over time.
Fill out a release form that allows the WS Registry to obtain selected Williams syndrome medical records.
 
All aspects of the WS Registry are optional but we hope you provide as much information as possible! Doing so is the best way to help everyone accurately learn about Williams syndrome.
 
The WS Registry will alert you to new Williams syndrome study opportunities. You then decide whether or not you want to participate in the study opportunities —the choice to participate is always up to you! 
 
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 the professionals who run the Registry
 

Understanding Research

Why is research so important? What is it?

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FAQs

Many families have questions about the Registry.

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Security and 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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