Collaborative Research for Williams Syndrome FAQs

What is the benefit of having a registry like CReWS?

The combined efforts of the WSA, families of those with WS, clinicians and researchers using the CReWS will establish best practices for care of children and adults with WS.

What kind of information will be collected?

You will be asked to answer questions about the health and development of your loved one with WS. You also will be able to provide the most accurate information by sharing medical records. If you attend one of the eight Williams Syndrome specialty centers that are part of the Williams Syndrome Clinical Consortium, your providers will be able to add medical information to your record. You will also learn about new research studies tailored to your family member.

How will data be collected?

You will provide all requested information through an online data collection system called REDCap (Research Electronic Data Capture). It is a secure web application used for building and maintaining online surveys and databases. REDCap can be accessed through your computer, tablet, or phone.

Where will information be stored?

All information collected will be stored on a secure server at Columbia University Irving Medical Center.

How often will I be required to provide data to the registry?

Families may be contacted periodically with health update questionnaires, subject-specific questionnaires or to answer short questionnaires as circumstances arise.

Whom will CReWS data be shared with?

Scientific investigators, internal (affiliated with consortium members) or external, seeking to recruit study participants for studies on various aspects of Williams syndrome. Information that identifies you, such as name and date of birth, will not be shared.

What difference will my participation make?

Williams syndrome is rare. Not enough information exists about it to quickly develop new therapies. However, you can help change that. You will be part of the largest effort to date to help everyone learn about Williams syndrome including how individuals do over time. Additional indirect benefits may include:

Advancing research into medical, developmental, and social concerns for those with Williams syndrome, which may be helpful in developing therapies and best practices.
Help the WS community learn how the features and symptoms of WS change as people get older
Direct connection to studies for which the participant may be eligible.

What if I need more information before participating?

For more information, please contact:

Michele Disco, MS, CGC

Williams Syndrome Consortium Coordinator
Columbia University Medical Center
T: 212-305-1573

How do I join CReWS?

Click here to get started.

Collaborative Research for Williams Syndrome FAQs

Learn More About CReWS