FAMILIES AND RESEARCHERS WORKING TOGETHER TO ADVANCE THE UNDERSTANDING OF WILLIAMS SYNDROME
Frequently Asked Questions
1. Is the Registry a place where I can connect with my friends or other families?
No. The Registry is not a listserve or a social networking site. The Registry helps you learn about new study opportunities, participate in research, and contribute to knowledge of Williams syndrome. If you want to connect with other Williams syndrome families, please visit the main WSA website: www.williams-syndrome.org.
2. Is the Registry a database?
Though the Registry collects medical records and information from you about your family member with Williams syndrome, it is not simply a database. It is a place for you to hear about new Williams syndrome research studies and choose whether or not to participate in some of these studies. The Registry is used by people like doctors, scientists, and psychologists to find individuals with Williams syndrome to take part in their studies.
3. Why does the Registry ask for medical information about my family member with WS?
Collecting this information about lots of individuals with Williams syndrome tells us how they grow and change over time. The Registry also uses the information you provide to help match your family member with WS to studies that apply specifically to him or her. Researchers may also be able to answer certain questions by studying de-identified information collected by the Registry.
4. Why am I asked the same questions every 1-2 years?
Some questions are repeated because certain medical problems can appear or disappear over time. Asking these questions regularly gives a better picture of medical health, as well as medical problems that occur in people with Williams syndrome, as they get older. [top]
5. Do I have to pay to join the Registry? Will you pay me?
No. You do not need to pay to join the Registry, nor will the Registry pay you. Participation is entirely voluntary. Some studies that you learn about through the Registry may offer payment; this is something you can review with each researcher.
6. Do I need an email address to join the Registry?
No. When possible, the Registry uses email to communicate with its members. However if you do not have an email address, we can contact you by regular mail or telephone.
7. If we are told about a study, do we have to participate?
No. You decide whether or not to participate in each study you learn about through the Registry. Even if you request more information about a study, you do not have to participate.
8. Does being part of the Registry mean I have to participate in a certain number of studies?
No. The purpose of the Registry is to give you information about new study opportunities. You can join as many studies or as few as you like.
9. Why have I not been told about a new study?
The Registry only tells you about studies that best apply to your family member with Williams syndrome. The studies you learn about are likely to be different than the studies someone else learns about. For example, if you tell the Registry your child has hearing loss but not high blood pressure, you will learn about a hearing loss study but not about a high blood pressure study.
10. Do I have to share medical records on my family member with Williams syndrome?
No, you do not have to share medical with the Registry; sharing records is entirely optional. Still, many families choose to do so because review of medical records is the best way to answer certain research questions. More details are available once you login.
11. What happens to the medical records I share with the Registry?
Medical records collected are reviewed and key pieces of information obtained from these records will be recorded in the Registry. Anonymous versions of these records may be shared with qualified researchers. For further details please login.
12. Does the Registry collect blood or other samples?
At this time, the Registry does not collect blood, saliva, or any other tissue sample. In other words, joining the Registry does not mean your family member with Williams syndrome has to give a sample. However, some of the studies you learn about through the Registry may ask for one of these samples. To emphasize again, the decision to participate in any study you learn about through the Registry is up to you.
13. Will I be able to see the results of studies I learn about through the Registry?
We ask researchers who use the Registry to provide a summary of their results. These will be available to you once you login.
14. I have a question about a study. Whom should I contact?
You should contact the Registry Coordinator, Jessica Waxler. She can be reached by phone at 617-726-5318 or by email at WSRegistry@partners.org.
15. Why am I not receiving emails from the Registry?
All Registry members should receive occasional emails. If you are not, please login and check your contact information (and make sure your email address is correct). You may also need to add the Registry email address, WSRegistry@partners.org, to your address book or list of contacts so that emails from the Registry are not sent to your spam folder.
16. Why am I receiving so many emails from the Registry?
The Registry sends emails for different reasons. You may receive an email each time there is a new study opportunity or a new survey. You may also get a reminder if you did not finish something. In other words, finishing a task will stop the reminder emails. Since taking part in these activities is optional, you can always say “no” to a study, and can answer only the survey questions you would like to answer.
17. What if I no longer want to be part of the Registry?
To withdraw from the Registry, please print out our Withdrawal Form. The Registry will remove your information if you ask us, in writing, to do so. Please mail or fax the form back to us at:
Attention: WS Registry Coordinator
175 Cambridge Street, Room 502
Boston, MA 02114
If you think you are interested in joining, get started here!