A new, exciting opportunity for people with Williams syndrome and their families to help lay the groundwork for new research into much-needed treatments and therapies for children and adults with WS.
What is The WSPCR Registry?
The Registry is a list of as many individuals with WS as possible, containing information about each person's health and developmental history. This list will enable authorized researchers to find potential candidates for research programs that can offer new hope for our WS family member's well being. And families will have the chance to participate in specific research programs, if they wish.
Why is it being set up?
Knowledge about the features, health problems, and genetic changes in people with WS has grown steadily over the past forty years. However, progress in developing new therapies has lagged behind.
To meet this need , the Massachusetts General Hospital (MGH) and the Williams Syndrome Association (WSA) have teamed up to create the WSPCR Registry. Our goal is to connect individuals with WS and their families with doctors and scientists interested in performing studies that can help find new treatments for the symptoms of WS. The Registry will also collect updated health and development information every year, so we all can learn how individuals with WS do over time.
Who Can Join?
Any parent or legal guardian can sign up their child or legal dependent who has WS. The individual with WS will be the Registry member, but the parent or legal guardian will provide all information on their behalf. You do not need to be a member of the WSA or a patient at the MGH to join the Registry.
If I join, What does it mean?
Joining the Registry does not mean that your child or legal dependent has to participate in any specific research study. Rather, the Registry gives you and your family an easy way to learn about studies for which your child or legal dependent with WS might qualify. When you join the Registry, you will provide us some basic information about your child or legal dependent with WS by completing a questionnaire. We will use that information to 1) try and “match” you with research studies that are potentially relevant to your child or legal dependent’s health or developmental concerns, and 2) learn more about the changes that occur in WS over time.
your Privacy will be protected
We respect your information as if it is our own! We will not provide any information to third parties, other than authorized researchers. Your information will be encrypted when you send it to us, and it will be stored securely in an MGH database.
To learn more
If you would like to learn more about the WSPCR Registry, click on the "Yes" button below. If you are not interested at this time, click "No" to go to the Williams Syndrome Association home page.
Developed under the auspices of the Massachusetts General Hospital.
The Williams Syndrome Patient and Clinical Research Registry is generously supported by grants from both the Williams Syndrome Association (WSA) and families of people with Williams syndrome.