FAMILIES AND RESEARCHERS WORKING TOGETHER TO Find Answers
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?