These instructions are meant to provide an overview of the PMSIR and how best to use it. We strongly recommend that you read through this entire page to ensure you get the most out of the registry, and that your data be saved correctly.


  • There are three primary questionnaires that make up the PMSIR. They are:
    • Clinical Questionnaire
    • Developmental Questionnaire 
    • Adolescent and Adult Issues Questionnaires
  • The Adolescent and Adult Issues Questionnaire is only for patients who are 12 years old or older. The rest are special projects other researchers asked us to make available to you. All of the questionnaires are listed under the My Profile tab when you sign in to your account.
  • You don’t have to finish a whole questionnaire all at once. You can answer a few questions or pages, save your answers by clicking “Next” at the bottom on the page, then logging out. Then you can come back to it later to finish. You MUST click “Next” to save that page’s answers!
  • When you do come back to finish a questionnaire that you already started, first Login, and you will be at the My Profile page.  Scroll down a little until you see all of the surveys listed; select the survey you were working on, then click on Complete Survey Now.  You will be on the page from your previous session.  You will not be able to access pages you did before until you've completed the entire survey.
  • Once you've finished the survey, you can go back and change your answers or view your results without paging through the entire survey.  To do this, click on My Profile and select one of the surveys.  Click on the  icon to view a single question or change an answer.
  • Please use the Next and Back throughout the survey and NOT your browser arrow buttons (those arrows to the left and right at the top left corner of your internet window).
  • Please answer every, single question.  If a question doesn't apply to the patient, click "Not Applicable."
  • If you do not know the meaning of a word, click on the Glossary tab on the menu bar to see the definition
  • One of our goals is to collect data on the person with PMS (the patient) over time, which means we need to see how your answers to these questions change over time. In order to save all of the answers that you ever enter, you need to update your questionnaires. It is very important that you do this by re-taking the entire questionnaire, NOT by going back in and changing old answers (that will permanently delete the old answer, so only do that if you are sure that your old answer was completely incorrect and was a mistake).

Your Contact/Demographic Information and Consent Form

  • Your contact information and other demographic information are stored under the Contact Info tab when you sign in to your account. When you click this tab, you’ll see a short summary of your information.
  • To see all of your information, or to change any items, click the “Update” link above this summary. Here you will see information on you, the patient, and their primary care doctor, as well as your PMSIR username. You can also change your password here if you forget it.
  • At the bottom of this same page you will also see the latest informed consent form, and how you answered each question. If you want or need to change any of your answers to the informed consent, you can do that here.
  • Be sure to click the Update button at the bottom to save and changes you’ve made!


  • The Attachment tab is where you can upload genetic test results and any other medical records you would like included in the PMSIR.
  • In order to upload your genetic report(s), click on the “Attachments” tab in your account. Use the drop down menu to select the “Type” of document you want to attach (i.e., Genetic Test Results) and then click on “Choose File” in order to browse your computer to find the appropriate file. When the document is correctly identified in the “Choose a file to upload” field, click on the “Upload” button and your document will be saved in your account in the PMS International Registry.