Canadian Hereditary Angioedema Registry (CHAER)

CHAEN has established the Canadian Hereditary Angioedema Registry (CHAER) to position Canada as a global leader in hereditary angioedema (HAE) research and care. The registry brings together patients, healthcare providers, researchers, and advocacy organizations in a collaborative effort to advance understanding of HAE, optimize patient outcomes, and improve quality of life for individuals living with this rare disease.

CHAER is a national patient and clinician-reported registry that collects real-world data from people living with HAE and their healthcare providers. By combining patient-reported experiences with clinical information, CHAER supports research, knowledge generation, and evidence-based improvements in HAE care across Canada.

Why CHAER Matters

Hereditary angioedema is a rare disease, and collecting real-world data is essential to understanding the impact of HAE on patients, families, and the healthcare system. CHAER provides a comprehensive source of information to help monitor health outcomes, identify unmet needs, support research, and contribute to improvements in HAE care.

Through collaboration among patients, clinicians, researchers, and healthcare organizations, CHAER supports Canadian and international efforts to advance knowledge and improve outcomes for individuals living with HAE.

What Information Is Collected?

CHAER combines patient-reported and clinician-reported information, including:

Diagnostic and clinical information collected by participating HAE physicians.
Treatment and medication information.
HAE attack characteristics and disease management information.
Patient-reported experiences, including quality-of-life measures.

Interested in Participating?

Patients:

Individuals living with HAE who are interested in participating in CHAER should speak with their HAE specialist or healthcare provider to determine whether their clinic currently participates in the registry.

Patients cannot enroll directly in the registry. Participation is currently available through participating clinics, with additional sites being onboarded through a phased national expansion process.

By contributing information to CHAER, patients help advance understanding of HAE and support research efforts aimed at improving care and quality of life for the HAE community.

Clinicians:

CHAER is continuing to expand its network of participating clinics across Canada through a phased onboarding process.

Healthcare providers and clinics interested in learning more about participation in the registry are encouraged to contact: info@chaen-rcaoh.ca

Privacy, Governance and Research

Participation in CHAER is voluntary. Information is collected with participant consent and managed in accordance with applicable privacy and ethics requirements.

De-identified registry data may be used to support approved research projects focused on improving the understanding, treatment, and management of hereditary angioedema. Individual participants are never identified in research reports, publications, or presentations.

CHAER supports collaborative research and evidence generation. Access to registry data for research purposes is subject to established governance processes and review by the CHAER Steering Committee to ensure that proposed projects align with the registry’s objectives and the interests of the HAE community.

Funding and Support

CHAER is supported by patients, healthcare providers, researchers, participating clinics, and funding partners committed to advancing HAE research and care.

CHAEN gratefully acknowledges the support of BioCryst, CSL and Takeda.