Are you a patient of a CHAER affiliated doctor? You may be eligible to participate in the registry!
Improve care | Support research | Stay informed
The Canadian Hereditary Angioedema Network (CHAEN) has established the Canadian Hereditary Angioedema Registry (CHAER) to study hereditary angioedema. A registry is a research tool that collects information on the health of individuals with a particular medical condition over time. This information is then used to improve resources available and the quality fo care received by patients.
The CHAER will aim to establish operations and recruit participants in all provinces and territories in Canada. Currently we are recruiting at 6 sites.
Current CHAER affiliated doctors: Dr. Stephen Betschel, Dr. Dawn Goodyear, Dr. Susan Waserman, Dr. Paul Keith, Dr. Gina Lacuesta, Dr. Hugo Chapdelaine, Dr. Amin Kanani.
Have Questions?
Visit our FAQ page- WHY SHOULD I PARTICIPATE?
- Your story will help improve the understanding of this rare disease. The information that you provide may also help you understand your own condition. It is the strength of collecting information from many participants and family members that has the potential to provide researchers with knowledge that can help advance care, improve access to new treatments, and better advocate for the patient community. Learn more
- WHO CAN PARTICIPATE?
- The registry is looking for participants with a confirmed diagnosis of hereditary angioedema. To understand this condition thoroughly, this registry wants to include people from a wide range of backgrounds. The only restrictions are that you must be 18 years of age or older and live in Canada. Enrollment is voluntary, confidential, and free of charge. You can withdraw at any time. Learn more
- IS MY INFORMATION SECURE?
- Absolutely. Your information will be given a coded number and access to to collected information is strictly controlled through an approval process to protect patient privacy. Many safeguards are in place to ensure your information is only used in ways that you have agreed to and that identifying information about you can never be released without consent. Learn more
"The Registry's purpose is to establish Canada as a global leader in HAE care and research, with a vibrant and collaborative community of patients, researchers, and healthcare providers working to optimize patient outcomes in adherence with best practices defined by Canadian and International guidelines"