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IBA Registry Team.
To join the registry, follow the instructions on the homepage and provide your consent. If you have any questions, email us at [email protected].
A registry is a research tool that collects health information from individuals with a specific disease over time. This data helps improve resources and care for patients.
The Inflamed Brain Alliance (IBA) created the Canadian PANS Registry to collect details about the progression, diagnosis, and treatment of PANS/PANDAS. This information supports research aimed at enhancing clinical care for those with PANS/PANDAS.
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.
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.
You'll provide information about demographics, health history, symptoms, treatment, and access to care. Your details will be anonymized with a coded number. Researchers may request access to the registry data to expand their studies, but they won’t have access to your personal information. If you're eligible for a study, the IBA Registry Team will contact you directly.
To participate, start by answering the screening questions on the homepage. Then, you'll be guided through a consent and registration process, where you'll confirm your understanding of the study. After that, you'll complete questionnaires about your or your child's health and quality of life.
Your information will be assigned a coded number to keep it confidential. Researchers and other stakeholders may request access to this data, but it is tightly controlled.
To protect your privacy, any data access requests must go through an approval process. Researchers must submit an application to IBA and obtain necessary local ethics and legal approvals. If granted, they will receive only de-identified data—no personal information will be shared.
If you're eligible for a clinical trial, the IBA team will contact you directly. We have strong safeguards in place to ensure your data is used only as you’ve agreed and that no identifying details are released without your consent.
Access to your information is carefully controlled to protect your privacy. Registry data can be used for: - Informing patients about trials and research opportunities - Creating and improving national care standards - Supporting advocacy efforts by patient organizations like IBA - Enhancing understanding of how PANS/PANDAS affects patients' and families' quality of life - Promoting clinical research and new therapy development in Canada
IBA collaborates with researchers and other stakeholders in the PANS/PANDAS community to find opportunities for patients. If we identify a trial or research opportunity that you may be eligible for, we'll send you a secure email invitation to contact the study team. Your contact information will never be shared outside the registry without your consent.
Please note that sharing information about a trial or research opportunity doesn’t mean IBA endorses it. Always make sure you fully understand and consent to any programs, whether within or outside the Canadian PANS Registry.
You and the IBA Registry Team share responsibility for your data. You own your data and can remove it from the registry at any time by withdrawing consent. IBA oversees the registry, ensuring your data remains confidential and is used appropriately. The IBA team reviews and decides on data access requests to protect your information.
Your information is securely stored on a server in Canada. You’ll be assigned a unique participant number (Patient ID) that doesn’t include any personal information. Only the IBA Registry Team and Lumiio staff will have access to identifying details for data analysis purposes.
Your data is protected with encryption, and your health information is separated from personal details for added security. This system is similar to the security measures used by banks for online banking.
"De-identification" refers to removing personal information from records to protect privacy. Once data is de-identified, it cannot be traced back to you because it no longer contains personal details.
To de-identify data, various types of information are removed, such as: names, specific geographic details (beyond the first three digits of a postal code), phone numbers, email addresses, social security and personal health numbers, health insurance and account numbers, license numbers, device identifiers, URLs and IP addresses, biometric data, and full-face photos.
For more details, refer to the Office of the Privacy Commissioner of Canada and other privacy law offices.