If you are a Researcher interested in determining whether there are sufficient Registry participants to pursue developing a study, please follow the instructions below.
Review the Questionnaire and select the criteria that interest you. For example, you may wish to screen the database to determine how many individuals selected answer choice PPS and SVAS under the question “Has the Registry Participant ever been diagnosed with a stenosis?” You will enter your variables of interest on the “Submit New Study Feasibility Proposal form” in the next step.
- Electronically submit your “Submit New Study Feasibility Proposal form” (available on this website) to the Executive Director of the Williams Syndrome Association for review. This form will ask for your contact information, details regarding your study idea, and your list of proposed search objects (taken from the Questionnaire form). You may also upload any files that more fully describe or support your feasibility study proposal, though this is not a required step.
- Monitor the status of your proposal on the “Status of My Proposal” table (Note: the researchers' section of the site is currently under construction - please check back in September).
- You will be able to search the Registry database for the variables you requested by use of an automatically enabled search button. The staff of the Registry will not be told your study idea to protect the privacy of your proposal.
- After the search is executed, you will be shown the total number of Registry participants who fit your requested variables. This will be displayed on the “Total Registrants Who Fit my Criteria” table, located on the Registry website, once you log in.
If you determine that you wish to pursue a full IRB-approved research project and use the data in the Registry, your IRB and our Research Advisory Board must approve your study before we can contact participants on your behalf. Please see the Full Study Proposal page of the website for more information.
