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The WS Registry - Understanding Research


Understanding Research

The Registry is designed to encourage research about Williams syndrome, especially clinical research.  As with all research studies, choosing to participate is totally up to you. 


What is Clinical Research?

Clinical research refers to studies that directly or indirectly involve people.  They focus on understanding medical problems and improving care for patients. 


Types of Clinical Research

As a member of the Registry, you are asked to answer questions about the medical and development health of your family member with Williams syndrome. As you read about new study opportunities announced by the Registry, you may be asked to consider additional activities, such as:

  • Completing interviews and surveys
  • Allowing a researcher to review medical records
  • Providing a sample for DNA tests
  • Having an x-Ray or MRI
  • Working on developmental tasks

You always choose whether you wish to participate in these activities - you are not required to do so simply because you are a Registry member.

Who regulates clinical research?


All clinical research studies must be approved by an Institutional Review Board (IRB). This Board makes sure that each study meets ethical and safety guidelines established by federal and state laws.  The IRB is made up of individuals of many different backgrounds. All studies you learn about through the registry have been approved by the researchers IRB as well as the Registry's approval process. 


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

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