WAGR Syndrome Patient Registry Update

WAGR Syndrome Patient Registry Update: New Section on COVID-19

The questionnaire for the IWSA WAGR Syndrome Patient Registry has been updated to include questions on COVID-19. This short series of questions covers how participants with WAGR syndrome have been affected by the virus, and how they have tolerated COVID vaccines to prevent infection.

Collecting data about WAGR syndrome and COVID-19 is important because it will give parents and physicians more information to help make informed decisions about healthcare.

Please go to the link below to review Frequently Asked Questions and update your child’s information in the WAGR Syndrome Patient Registry. Then click "Enroll or Update Now" at the top of the page. Now is also a great time to review your questionnaire, and add any new conditions or diagnoses since the last time you visited.

https://wagr.org/wagr-syndrome-patient-registry