The website address is: superficialsiderosispatientregistry.org
Take your time and look around the public areas of the website. The email sign-up is for general website announcements ( Map updates, Charts posted, news on requests, etc.). Other than popping in to see the location map after it updates or some of the sample charts you won’t be expected to return until we receive a request for information.
A chart area will be added once we gather enough data to plug into. Your completed surveys are stored in a separate verticle database. Any personal identifying information you entered is for administration purposes only and is not included in any charts, .pdf reports or .csv requests. These are the formats we will offer for research requests. We can sort and create reports without ever looking at your individual information.
Step One: Choose your registration category.
Complete the website registration form and submit it. If there are any errors or missing entries, the submit button will not work.
Step Two: Log onto the website
After you submit your registration, you will find yourself at the login area. Please make sure you accept the cookie notice. The security software will store a session cookie you must use to make the website work correctly. If you experience problems logging in, please try clearing your browser and be sure you have the browser set to accept cookies from the site.
Step Three: Your Profile
Anytime you log onto the site, you will land on your profile page. You may upload a custom header to your page, edit your information, or change your privacy settings. If you are a patient member, you may click through to the Patient Survey registration from the link located above the header area. If you are a caregiver or professional registrant, you may visit other areas of the site.
Step Four: Complete the Survey Registration
Fill out the survey registration form and submit it. You will receive an automated email response with a unique identifying code and a link to your patient survey. If you lose your survey link, you may return to the registration area and request it to be re-sent to you. You may save your progress and return anytime to finish the survey.