Thank you to everyone who has taken the time to complete this POIS Survey so far!
I understand that there has been some confusion given that University of Chicago posted a survey to this forum last year as well. If you've taken the time to complete this survey after taking that one last year, I especially want to extend my sincere thanks. The purpose of this patient registry is to raise awareness of POIS and create a database of patient-reported information, including but not limited to symptoms, time to diagnosis, and treatments trialed. This information will help physician scientists better understand the experiences of patients with POIS and identify what facets of the disease are most prevalent. Knowing this information will guide future research on the etiology of POIS and treatment options. Although University of Chicago is a large medical center in a metropolitan city, we still see few patients with POIS in our daily practice and many patients haven't been formally diagnosed yet. Posting our survey on this forum allows us to reach a much wider audience then we would in our clinics alone. Unfortunately, the survey posted last year was done with a medical student from an outside institution listed as the project coordinator. Because of this, and other issues, that survey data collected had to be destroyed. If you have any questions about this survey, please do not hesitate to reach out to me. Thanks again.
