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.

In-clinic: Medical information is collected in specialty medical clinics attended by patients with hereditary angioedema. Your clinical team will enter information on your behalf.

Direct-to-patient: Information on quality of life and health history is collected directly from registry participants. As a participant, you will be asked to answer questions through a secure online portal.

If you consent to participate, your clinical team will enter your information and you will be invited via e-mail to access the secure online portal where you can complete questionnaires relating to your health and quality of life. The clinical research team collects different information than the online patient portal. The information collected through the online portal aims to ensure your voice and perspective is considered when conducting research.

Common uses of registry data include studying the relationships between different symptoms, identifying treatments that are either effective or not for specific symptoms, and developing new standards of care.

Researchers may also request new studies to look at potential diagnostic tests or tools and innovative treatments. These requests will be vigorously screened for their value. Registry members may be invited to participate in additional studies and given the option to either decline or sign a separate consent in which the details of those studies would be explained.

You and the CHAER Steering Committee are responsible for your data. As the participant, you retain ownership of the data and can withdraw your data from the registry at any time by withdrawing consent. The steering committee is responsible for overseeing the registry in alliance with the registry governance. This oversight includes ensuring data confidentiality is maintained and appropriate and effective use of data is promoted. It is the responsibility of the steering committee to review data access requests and approve or deny such requests.  

Absolutely. Your information will be given a coded number. Scientists and other stakeholders (e.g., clinical researchers, healthcare professionals, government regulators, Health Technology Assessment bodies, patient advocacy groups, etc.) studying hereditary angioedema may approach the registry steering committee to ask for access. Access to collected information is strictly controlled through an approval process ​​​​to protect patient privacy. This process requires that the requesting party submit a data access request application to the CHAERSC after gaining local ethics and legal approvals where applicable. If access to data is granted by the CHAERSC, they will be able to obtain deidentified data for use in expanding their research studies, but they will not be able to access your identifying information. If you are eligible for a clinical trial, the CHAER team will reach out to you directly to notify you.

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

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 restriction is that you must live in Canada, be a patient of a CHAER-affiliated doctor, and provide your informed consent to participate.

Enrollment is voluntary, confidential, and free of charge. You can withdraw at any time.

If you would like to participate in the registry, you will need to provide your consent and sign up with your physician in your clinic. If you have any questions, please contact us at registry@chaen-rcah.ca.