Canadian PANS Registry
Share your story. Improve care.
bring health to mind.
Diagnosed with or suspected to have PANS or PANDAS? You or your child may be eligible to participate in the Canadian PANS Registry (CPR).
The Inflamed Brain Alliance (IBA) created the Canadian PANS Registry to gather information about the diagnosis, progression, treatment, and lived experiences of individuals with PANS and PANDAS across Canada. This ethics-approved national study supports advocacy, clinical research, and the development of future trials and therapies in Canada.
The study begins with screening questions on the homepage, followed by consent and registration. Participants will complete questionnaires about key aspects of their or their child’s health, including demographics, symptoms, treatments, access to care, financial impact, and research priorities.
Completing the questionnaires takes approximately 10 to 20 minutes.
About Data Access, Security, and Purpose of the Registry
Information about how your data is accessed, stored, and safeguarded—as well as the overall purpose of the Canadian PANS Registry—is outlined in the participant consent forms. Additional information is also available in the FAQ section and Lumiio’s Privacy Policy on the CPR website.
To view the consent forms, simply complete the short intake screener. No email address is required at this stage.
Help improve understanding of PANS and PANDAS in Canada.
Why participate?
By sharing your or your child’s story, you contribute to advancing care standards, understanding quality-of-life impacts, and fostering new therapies for PANS and PANDAS. Your participation also supports the Inflamed Brain Alliance’s advocacy efforts, clinical research initiatives, and the future development of trials and treatments in Canada.
Who can participate?
Any child or adult in Canada with a diagnosed or suspected case of PANS or PANDAS is eligible to participate. Enrollment is voluntary, confidential, and free of charge. Participants may withdraw at any time.
Ready to sign up?
Already registered?
We are working toward our registration goal of 100 patients!
National ethics ID: 2025-05-003 | HREBA ID: HREBA.CHC-25-0006
Canadian PANS Registry | Principal Investigator: Mary Noseworthy | January 9, 2025