what is a Study Proposal?

If you are a Researcher seeking to recruit subjects through the Registry, please submit a Study Proposal. Researchers with a Study approved by the Registry Research Advisory Board will be able to identify potential study participants from the Registry and receive contact information for interested families.

For a Study Proposal you will need:

• Basic information about your study (i.e. title, keywords, abstract)
• A Study Proposal document (i.e. any document, new or existing, providing additional study details)
• A Study Announcement to be viewed by Families

Approval from your Institutional Review Board (IRB) is not required prior to submitting a Study Proposal but documentation of approval will be needed before identifying information is released.

You may submit as many Study Proposals as you wish; each must be electronically submitted using the Registry's upload mechanism.

How to Access the Electronic Study Proposal Form

1. Make sure you have created an account with the Registry. To protect the privacy of Registry Members, only qualified Researchers with an account approved by the WSA Executive Director may submit Study Proposals. To Register, please go to For Researchers. You do not need to create a new account if you have already Registered. The Principal Investigator should Register and create an account as study proposals will be linked to his/her name.
   
   
2. Log on to "Your Home" page and follow the link to "Start or Resume New Study Proposals". Once your Researcher Registration has been approved you will be able to log on to "Your Home" page. Clicking the "Start or Resume New Study Proposals" link will take you to an electronic Study Proposal Submission Form. Additional instructions will be provided on the Study Proposals Page as well as on the Instructions and Forms page located on "Your Home" page.
   
   
3. You may access the Study Proposal Form as many times as you like. Your Study Proposal Form does not have to be completed all at once; you may save your progress and resume later. Prior to submitting however, you will not be able to work simultaneously on more than one Proposal.
   
   

After you Submit a Study Proposal

Prior to Approval:

• You will be able to monitor the status of your Study Proposal from "Your Home" page.
• You will be able to upload any IRB approval documents not previously submitted.

Following Approval:

• Registry Staff will provide you a list of Registry Members eligible for your Study.
• You will select Registry Members to receive your Study Announcement.
• You will be provided Contact Information for Registry Members eligible for and interested in your Study.