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The Registry - Family Questions

Families and Researchers Working Together to Find Answers

General WS Registry Questions:

What is the WS Registry?
The WS Registry is a dynamic, online database of information, like health updates, provided by families just like you. It also connects you with new research opportunities. As more people add their family members’ information, it will become easier to do research on Williams syndrome. More research means the development of better treatments for Williams syndrome at a much quicker pace. 
 
What will I be asked to do if I join the WS Registry? 
You will be asked to answer questions about the health and development of your family member with WS.  You also will be able to provide the most accurate information by sharing medical records. You will just be asked to complete medical record release forms. This will allow the WS Registry to obtain medical records about your family member with Williams syndrome. You will also learn about new research studies tailored to your family member.
 
Why should I join the WS Registry?
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 and how individuals do over time. This will hopefully lead to better ways of caring for people with Williams syndrome.
 
Also, the WS Registry can use the information you provide to tell you about important study opportunities tailored to your family member with Williams syndrome. 
 
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; it serves a different “connecting” purpose – that of connecting families with research opportunities. If you want to connect with other Williams syndrome families, please visit the main WSA website: www.williams-syndrome.org 
 
Is the WS Registry simply a database?
Though the Registry collects medical records and annual information from you about your family member with Williams syndrome, it is not simply a database- it is a very dynamic 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. It is also a place to keep coming back to visit for updates on study findings. The WS Registry is used by people like doctors, scientists, and psychologists to find individuals with Williams syndrome to take part in their studies.
 
Do other rare disorders have registries? 
Yes!  Many other family support groups support their own registry efforts.  The WS Registry team stays up-to-date on these other efforts to ensure we’re using current strategies to achieve WS Registry goals and keep collaboration with those other efforts a possibility.

Consent Questions:

Why do I see a consent/authorization form when I go to join the WS Registry?
The WS Registry collects a lot of health and development information.  It also helps to facilitate research.  Because of this, there is a consent form for families to review so they know what they are agreeing to.  If you have any questions, do not hesitate to contact the 617-643-3190 or WSRegistry@partners.org
 
Where can I view the current WS Registry Consent Form?
You can view it right here: Consent Form

Questions about Costs:

Who supports the WS Registry?
The WSA supports the WS Registry!
 
Do I have to pay to join the WS Registry?  Will you pay me?
No. You do not need to pay to join the WS Registry, nor will the WS 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.

Questions About Surveys:

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. 

Questions About Studies: 

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. 
 
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. 
 
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. 

Questions about Medical Records: 

Do I have to share medical records on my family member with Williams syndrome?
No, you do not have to share medical with the WS 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 as accurately as possible. More details are available once you login. 
 
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 WS Registry.  Anonymous versions of these records may be shared with qualified researchers.  For further details please login.
 
Is the information I share securely stored?
The WS Registry works very hard to protect the privacy of you and your family member with Williams syndrome. To read about the steps we take to keep your information safe, click here.
 
Will I be able to see the results of studies I learn about through the WS Registry?
We ask researchers who use the WS Registry to provide a summary of their results.  These will be available to you once you log in.

Other WS Registry Questions:

Do I need an email address to join the Registry?
No.  When possible, the WS 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.
 
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. 
 
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.
 
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 means your family member with Williams syndrome does not have 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 totally up to you.
 
What if I no longer want to be part of the Registry? 
To withdraw from the Registry, please print out our Withdrawl form. The WS 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
Fax: 617-724-1911
 

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