Williams Syndrome Registry home page

Do I have to pay for access to Registry participant data?
No. Access to Registry participant data is free. The Williams Syndrome Association (WSA) asks that you provide your study results to the Registry at the time they are accepted for publication so they may be shared with the WS community.

By using the Registry data set, am I agreeing to anything?
No, other than agreeing to provide the Registry with enrollment numbers and a lay summary of results at the time your work is accepted for presentation or publication. This information will be shared with the WS community through the WSA and the WSPCR Registry.

I am a Researcher interested in recruiting research subjects through the Registry. How do I access the information that has been collected?
To gain access to participant information in the Registry, you need to Register. Once your Registration is approved, you will be able to search the Registry's de-identified data (using the Simple Search interface). For additional access and to obtain contact information for families interested in learning more about your study, you must submit a Study Proposal.

Why do I have to Register? What does the Researcher Registration Process entail?
You are being asked to Register solely to protect Registry Members. As part of the Registration Process, you will be asked to confirm you are a Researcher and will be using the Registry for research purposes. You will also be asked to provide a small amount of information (5 short questions) about yourself.

How often do I have to Register?
You only have to Register once. After your account is approved, you may access Simple Searches to search the de-identified Registry data as often as you wish. YOu may also submit as many Study Proposals as you wish.

What is a Simple Search? What is a Study Proposal?
To learn more about both Simple Searches and Study Proposals, please view their respective pages listed in the Navigation Bar to your left.

Can I submit multiple Study Proposals?
Yes. You may submit as many Study Proposals as you wish however, you will only be able to work on one Study Proposal at a time. Although you may save your work and resume later, you will not be able to begin working on another proposal until you have submitted your previous Study Proposal (i.e. you cannot start working on a 2nd Study Proposal until you have submitted your 1st Proposal).

Who reviews the Study Proposal(s) I submit?
The Registry Review Committee will be the primary reviewers of your Study Proposal(s). To learn more about the Committee members visit the "About Us" page. If it is felt your proposed study is highly specialized and requires expert input it will be sent for external review. Registry Staff will also veiw your proposal for completeness and appropriate use of the Registry.

How long does it take to receive a decision regarding my Study Proposal?
Please allow 1-2 months to receive a decision. You may view the status of any of your Study Proposals by following the link "Study Proposals I've Submitted" from "Your Home" page. If you do not see your proposal listed in the Study Proposal Table or if the Status is not being updated, please contact the Registry Coordinator to ensure that your proposal was received.

How do I contact the Registry Staff if I have questions about my submission or the submission procedures?
You may email the Registry Staff at WSRegistry@partners.org or call (617) 726-5318.


	Site Home For Families About Joining Benefits & Risks FAQs Join Now Withdraw For Researchers FAQs Simple Searches Study Proposals Site Login Already Registered Your Home Log Out About Us Meet the Staff Contact Us Definitions			For Researchers: Frequently Asked Questions Do I have to pay for access to Registry participant data? No. Access to Registry participant data is free. The Williams Syndrome Association (WSA) asks that you provide your study results to the Registry at the time they are accepted for publication so they may be shared with the WS community. By using the Registry data set, am I agreeing to anything? No, other than agreeing to provide the Registry with enrollment numbers and a lay summary of results at the time your work is accepted for presentation or publication. This information will be shared with the WS community through the WSA and the WSPCR Registry. I am a Researcher interested in recruiting research subjects through the Registry. How do I access the information that has been collected? To gain access to participant information in the Registry, you need to Register. Once your Registration is approved, you will be able to search the Registry's de-identified data (using the Simple Search interface). For additional access and to obtain contact information for families interested in learning more about your study, you must submit a Study Proposal. Why do I have to Register? What does the Researcher Registration Process entail? You are being asked to Register solely to protect Registry Members. As part of the Registration Process, you will be asked to confirm you are a Researcher and will be using the Registry for research purposes. You will also be asked to provide a small amount of information (5 short questions) about yourself. How often do I have to Register? You only have to Register once. After your account is approved, you may access Simple Searches to search the de-identified Registry data as often as you wish. YOu may also submit as many Study Proposals as you wish. What is a Simple Search? What is a Study Proposal? To learn more about both Simple Searches and Study Proposals, please view their respective pages listed in the Navigation Bar to your left. Can I submit multiple Study Proposals? Yes. You may submit as many Study Proposals as you wish however, you will only be able to work on one Study Proposal at a time. Although you may save your work and resume later, you will not be able to begin working on another proposal until you have submitted your previous Study Proposal (i.e. you cannot start working on a 2nd Study Proposal until you have submitted your 1st Proposal). Who reviews the Study Proposal(s) I submit? The Registry Review Committee will be the primary reviewers of your Study Proposal(s). To learn more about the Committee members visit the "About Us" page. If it is felt your proposed study is highly specialized and requires expert input it will be sent for external review. Registry Staff will also veiw your proposal for completeness and appropriate use of the Registry. How long does it take to receive a decision regarding my Study Proposal? Please allow 1-2 months to receive a decision. You may view the status of any of your Study Proposals by following the link "Study Proposals I've Submitted" from "Your Home" page. If you do not see your proposal listed in the Study Proposal Table or if the Status is not being updated, please contact the Registry Coordinator to ensure that your proposal was received. How do I contact the Registry Staff if I have questions about my submission or the submission procedures? You may email the Registry Staff at WSRegistry@partners.org or call (617) 726-5318.
	Last Updated: 03 Feb 2012 4AM EST