The Canadian Hereditary Angioedema Registry (CHAER)

Summary

A registry is a research tool that collects information of the health of individuals with a particular disease over time. This information is then used to improve resources available and quality of care for patients. The Canadian HAE Registry is a Canada-wide registry that captures information from people diagnosed with HAE. Information is then used in a variety of ways to improve HAE care.
HOW IT WORKS?
Patient-reported information on medical history, treatments and surgeries, attacks, and quality of life is collected from patients.
In clinic: Medical information is collected in specialty medical clinics attended by HAE patients.
Access to collected information is strictly controlled through an approval process to protect patient privacy.
Common uses of registry data include:
- notifying patients of clinical trials and other research opportunities
- Understanding care patients are receiving and how well it aligns with practice guidelines
- advocacy efforts for patient organizations and clinical experts
- research to understand the quality of life and impacts on patients and families
- research to better understand HAE
- clinical research for new therapy development