Canadian PANS Registry
Share your story. Advance research. Help 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).
Inflamed Brain Alliance (IBA) established the Canadian PANS Registry to better understand the diagnosis, progression, treatment, and lived experiences of individuals affected by PANS and PANDAS across Canada. Information collected through the registry will help strengthen research, support advocacy, improve education, and contribute to a better understanding of these conditions.
Participation begins with a short intake screener, followed by informed consent and registration. Participants then complete questionnaires about key aspects of their or their child’s health, including:
- Demographics
- Symptoms
- Treatments
- Access to care
- Financial impact
- Research priorities
Completing the questionnaires takes approximately 10–20 minutes.
About the Registry
The Canadian PANS Registry is a national research initiative designed to collect standardized information from individuals and families affected by PANS and PANDAS across Canada. By bringing together experiences from across the country, researchers can better understand these conditions, identify patterns, and help inform future research, education, and advocacy efforts.
About Data Access, Security & Purpose
Information about how your data is collected, stored, accessed, and protected—as well as the purpose of the Canadian PANS Registry—is provided within the participant consent forms. You can review the consent forms after completing the short intake screener. No email address is required at this stage.
Additional information is available in our Frequently Asked Questions and Lumiio’s Privacy Policy.
Why Participate?
Every participant helps build a better understanding of PANS and PANDAS in Canada. By sharing your or your child’s experience, you contribute to:
- improving understanding of PANS and PANDAS
- identifying patterns in symptoms, treatments, and access to care
- supporting future clinical research
- informing education and advocacy initiatives
- helping lay the foundation for future clinical trials and therapies
Your participation today has the potential to benefit individuals and families across Canada for years to come.
Who Can Participate?
You may be eligible if:
- you are an adult living in Canada with a diagnosed or suspected case of PANS or PANDAS; or
- you are the parent or legal guardian of a child living in Canada with a diagnosed or suspected case of PANS or PANDAS.
Participation is:
- Voluntary
- Confidential
- Free of charge
Participants may withdraw from the registry at any time.
Why Participate with Confidence
The Canadian PANS Registry is supported by scientific leadership, independent research ethics approval, secure data management, and a multidisciplinary team committed to conducting high-quality research responsibly.
If you would like to learn more about who leads the registry, how it is governed, and the safeguards in place to protect participants, please visit our: Leadership, Governance & Ethics
Help improve understanding of PANS and PANDAS in Canada.
Help Us Reach Our First Milestone
Our initial goal is to enroll 100 participants in the Canadian PANS Registry.
Every participant helps create a stronger foundation for research, improves understanding of PANS and PANDAS, and contributes to better care for future individuals and families.
Ready to Participate?
Whether you are an adult living with PANS or PANDAS, or a parent or guardian completing the registry on behalf of your child, your experience matters. Together, we can improve understanding, strengthen research, and help shape a better future for Canadians affected by PANS and PANDAS.
Ready to sign up?
Already registered?
National ethics ID: 2025-05-003 | HREBA ID: HREBA.CHC-25-0006
Canadian PANS Registry | Principal Investigator: Mary Noseworthy | January 9, 2025