How to Submit a Full Study Proposal

If you are a Researcher with an IRB-approved study protocol who would like to recruit research subjects through the Registry, please follow the instructions below.

1. Review the Questionnaire and select the criteria that interest you. For example, you may wish to review the database for all individuals who selected answer choice PPS and SVAS under the question “Has the Registry Participant ever been diagnosed with a stenosis?” Please enter your variables of interest on the “New Proposal Submission Form” in the next step.
   
   
2. Electronically submit a New Proposal Submission Form (available on this website), proof of IRB approval, and your study announcement to the Registry's Research Advisory Board for review. Proof of IRB approval may also be mailed or faxed to us. The New Proposal Submission Form will collect your contact information, a synopsis of your proposal, and a list of search variables you are interested in, taken from the questionnaire.
   
   
3. Monitor the status of your proposal on the Status of My Proposal Table available when you log in to the Registry website.
   
   
   

After your Proposal is Approved by the Professional Board

1. A search button will be enabled for you to search the Registry database for your selected variables. These results will be available when you log-on to the Registry website. The data will contain the code numbers of Registry participants who fit your search criteria, their answers to your search criteria, their gender, and current age (or year of birth).
   


2. You will determine which Registry participants should receive your study announcement by selecting checkboxes next to the code numbers of participants you wish to contact .
   
   
3. We will contact the participants’ parents or legal guardians on your behalf and provide them with your study announcement.
   


4. Check the Interested Registrants’ Contact Information Table, which will be available on the Registry website once you log in. This table will provide the contact information for parents or legal guardians who have informed us that they would like more information about your study. You can directly contact anyone on that list to provide him or her with more information about your study.