Governance & Ethics
Committed to ethical, transparent research.
The Canadian PANS Registry is committed to conducting research with integrity, protecting participant privacy, and maintaining the highest standards of ethical oversight.
The Canadian PANS Registry is operated by Inflamed Brain Alliance and functions as an independent research registry. It is not affiliated with a university, hospital, or research institute.
Scientific oversight is provided by the Principal Investigator, while independent ethics review helps ensure the rights, safety, privacy, and well-being of participants are protected.
Table of Contents
How the Registry Is Governed
The Canadian PANS Registry is supported by six key components that work together to ensure the registry is ethically governed, securely managed, and positioned to support meaningful research.
Independent Registry
The Canadian PANS Registry is operated by Inflamed Brain Alliance, Canada’s national registered charity dedicated to supporting individuals and families affected by PANS and PANDAS.
Unlike many patient registries, the Canadian PANS Registry is not affiliated with a university, hospital, or research institute. Instead, it is independently operated by Inflamed Brain Alliance in collaboration with the Principal Investigator and guided by independent ethics oversight.
This independent model allows the registry to collaborate with researchers, clinicians, healthcare organizations, and institutions across Canada while remaining focused on advancing knowledge and improving outcomes for individuals affected by PANS and PANDAS.
Principal Investigator & Registry Team
The Canadian PANS Registry is led by the Principal Investigator and supported by the Registry Team. Together, they are responsible for the scientific leadership, ethical oversight, and day-to-day administration of the registry.
Working collaboratively, they oversee participant engagement, registry operations, study administration, communications, and ongoing compliance with approved research and ethics requirements.
Dr. Mary Noseworthy, MD, FRCPC
Principal Investigator
Dr. Mary Noseworthy is the Principal Investigator of the Canadian PANS Registry and provides scientific leadership for the study. She is responsible for ensuring the registry is conducted with scientific integrity, ethical oversight, and in accordance with approved research protocols.
Working closely with the Registry Team, Dr. Noseworthy oversees the registry’s scientific direction, protocol implementation, and ongoing compliance with research ethics requirements. She is committed to advancing knowledge of PANS and PANDAS through high-quality, ethically conducted research that supports improved understanding and care.
Marnie Deschenes, BMus
Registry Team
Marnie Deschenes is the Executive Director and Co-Founder of Inflamed Brain Alliance, Canada’s national registered charity dedicated to supporting individuals and families affected by PANS and PANDAS.
She leads the day-to-day administration of the Canadian PANS Registry, including participant engagement, registry operations, communications, ethics administration, and collaboration with researchers and clinicians across Canada. Drawing on both organizational leadership and lived experience as the parent of two children diagnosed with PANS/PANDAS, Marnie helps guide the registry’s continued development and national implementation.
Kirsten Popowich, BSc
Registry Team
Kirsten Popowich holds a Bachelor of Science with a specialization in Psychology from the University of Alberta and serves as a volunteer with Inflamed Brain Alliance. She is currently preparing for medical school through the Medical College Admission Test (MCAT).
Kirsten supports the day-to-day administration of the Canadian PANS Registry, including participant engagement, registry operations, study administration, and communications. She also brings experience in participant support, office administration, and neurotherapy, helping ensure participants have a positive and well-supported registry experience.
Steering Committee
A Steering Committee is being established to provide strategic guidance for the Canadian PANS Registry. Once fully formed, the committee will help support the registry’s long-term direction, governance, and relevance to the PANS and PANDAS community.
The committee will bring together expertise in research, healthcare, public policy, and lived experience to help guide the registry’s future development.
Dr. Mary Noseworthy, MD, FRCPC
Steering Committee Chair
Dr. Mary Noseworthy serves as Chair of the Steering Committee and provides scientific leadership for the Canadian PANS Registry. As Principal Investigator, she helps ensure the registry is conducted with scientific integrity, ethical oversight, and in accordance with approved research protocols.
As the committee begins its work, Dr. Noseworthy will help guide the registry’s strategic direction, support research priorities, and promote high standards in the governance and conduct of the registry.
Michael Friesen, MA
Steering Committee Member
Michael Friesen is a Senior Policy Advisor with the Ontario Ministry of the Environment, Conservation and Parks. He brings experience in public policy, governance, strategic planning, and organizational leadership.
As the parent of a child diagnosed with PANS, Michael contributes valuable lived experience alongside his professional expertise. Through the Steering Committee, he will help support the registry’s governance, strategic direction, and long-term development.
Susan Warren, MSc, BSN, RN, BSc
Steering Committee Member
Susan Warren is a Clinical Epidemiologist and Registered Nurse with expertise in epidemiology, health research, public health, and evidence-informed decision-making. She brings extensive experience in research methodology and data interpretation.
As the parent of a child diagnosed with PANS, Susan contributes both professional expertise and lived experience. Through the Steering Committee, she will help inform the registry’s strategic direction and support its continued scientific and ethical development.
Committee Development
The Steering Committee has not yet formally convened. Additional members will be appointed before regular meetings begin.
Future membership is expected to include clinician-researchers and an adult living with PANS or PANDAS, helping ensure the committee reflects a balance of scientific, clinical, policy, organizational, and lived-experience perspectives.
Research Ethics
Protecting participants is central to the Canadian PANS Registry.
Before participant enrollment began, the registry underwent independent ethical review to help ensure the rights, safety, privacy, and well-being of participants are protected.
The registry has received ethics approval from:
These independent research ethics boards reviewed the study protocol, participant information, informed consent process, privacy protections, and data management procedures before approving the registry.
Secure Research Platform
Participant information is collected and managed using Lumiio, a secure platform designed specifically for health research and patient registries.
The platform provides:
- Secure participant registration
- Confidential online questionnaires
- Encrypted data storage
- Role-based access controls
- Secure management of research data
Only authorized members of the Registry Team have access to participant information required to administer the registry in accordance with approved ethics protocols.
Registry Coordination
The Canadian PANS Registry is coordinated by Inflamed Brain Alliance in collaboration with the Principal Investigator. Responsibilities include:
- Registry administration
- Participant communications
- Recruitment and awareness
- Ethics and regulatory documentation
- Coordination with the secure research platform
- Collaboration with researchers and clinicians
- Ongoing registry operations
Our Commitment
The Canadian PANS Registry is committed to:
- Protecting participant privacy and confidentiality
- Conducting research ethically and responsibly
- Maintaining high scientific and ethical standards
- Incorporating lived experience into the registry’s ongoing development
- Collaborating with researchers and clinicians to advance knowledge of PANS and PANDAS
- Being transparent about how the registry is governed and managed