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 the results of your study at the time your work is accepted for publication so that they may be shared with the WS community through the WSA and the WSPCR Registry. The Registry encourages you to provide a lay summary which will be posted for Families to view.

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 have access to deidentified data allowing you to perform Simple Searches. For additional access and to be able to recruit participants, you must submit a Study Proposal.

Why do I have to Register? What does the Researcher Registration Process entail?
We ask you 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. The director of the WSA will then confirm your status as a Researcher.

How often do I have to Register?
You will only have to Register once. After your account has been approved, you may access Simple Searches as often as you wish and 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).

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 the results of your study at the time your work is accepted for publication so that they may be shared with the WS community through the WSA and the WSPCR Registry. The Registry encourages you to provide a lay summary which will be posted for Families to view. 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 have access to deidentified data allowing you to perform Simple Searches. For additional access and to be able to recruit participants, you must submit a Study Proposal. Why do I have to Register? What does the Researcher Registration Process entail? We ask you 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. The director of the WSA will then confirm your status as a Researcher. How often do I have to Register? You will only have to Register once. After your account has been approved, you may access Simple Searches as often as you wish and 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). 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: 11 Mar 2010 4AM EST