Canadian PANS Registry

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. The Inflamed Brain Alliance (IBA) created the Canadian PANS Registry (CPR) to gather information about the progression, diagnosis, and treatment of PANS/PANDAS. This ethics-approved national study will support research, improve clinical care, and strengthen advocacy for timely diagnosis and treatment across Canada. Completing the questionnaire 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 clearly outlined in the participant consent forms. Additional details can also be found in the FAQ section and Lumiio’s Privacy Policy, all available 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 should you participate?

Your story will enhance the understanding of PANS and PANDAS. The information you provide may also offer insights into your own condition. By contributing to a larger pool of data, you’ll help researchers improve care, develop new treatments, and advocate for the PANS/PANDAS community.

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. You may withdraw at any time.

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Let’s reach our goal of 100 participants by the end of 2025!

National ethics ID: 2025-05-003 | HREBA ID: HREBA.CHC-25-0006
Canadian PANS Registry | Principal Investigator: Mary Noseworthy | January 9, 2025