International PANS Registry
Our mission is simple: A cure for patients with PANS/PANDAS.
Frequently asked questions
About IPR
Participants Enrolled
Participants Finished
Important Registry Information
Due to a lack of funding, the International PANS Registry at the University of Washington is not currently accepting new enrollments. Peer-review publications are in process. Please refer to our latest manuscript for additional details.
What is the International PANS/PANDAS Registry (IPR)?
International PANS Registry (IPR) is a simple patient-centric data repository housed at the University of Washington (UW) driven by a vision to serve as a bridge connecting researchers to patient data. The purpose is to accelerate research, overcome barriers to healing, and make life-enhancing treatments accessible to all children and adults with PANS.
SAFE & SECURE
Under a structured Institutional Review Board (IRB) approved protocol from the University of Washington (UW) on REDcap, the International PANS Registry (IPR) captured comprehensive information on disease characteristics, environment, treatments, lab markers, maternal health, and lifestyle. Consent from participants to contribute their information and their data was closely monitored for safety and quality under clear systematic procedures. Only qualified project investigators on the IRB will access raw data and each hold Protecting Human Research Participants certification through the National Institute of Health (NIH). Please refer to your consent form for additional questions.
PATIENT-CENTERED
IPR was created with children and families as our sole priority. We are honored to facilitate a transfer of power back into the hands of patients and families. Like you, we have felt powerless at times. The IPR changes that. Patients and their families have participated in survey design, focus groups, and an extensive pilot to make this Registry possible. They have been determined to have the voices of their children heard and the IPR will accomplish that goal.
Inclusive
While we understand strict criteria is necessary to conduct stellar research, IPR is committed to no child being left behind. Far too many individuals don’t meet the strict research criteria of PANS and PANDAS, and there remains a lack of awareness among the medical community. IPR encourages broad patient participation by allowing those who don’t meet strict PANS criteria, yet suspect their symptoms are immune-mediated, to be deemed eligible for enrollment. We believe our children don’t have time to wait for the diagnostic criteria to appropriately broaden.
Collaborative
IPR is committed to collaboration. The project is a great example of how people coming from different backgrounds, all with differing perspectives, can work together beautifully towards a common goal. Together, with members of the scientific community, clinicians, non-profit partners and most importantly, patients and their families, we believe our patient-reported outcomes will be of great value to the cause.
How does it work?
What are doctors and researchers saying about the International PANS Registry?
Having a patient-reported registry like IPR is essential to understanding the epidemiology of this disease.
