The registry was designed to improve patient care in Canada and drive amyloidosis research. By participating you can:
- Help improve care for individuals affected by amyloidosis
- Learn how to participate in important research
- Help improve access to new treatments

Direct-to-patient: Information on quality of life and health history is collected directly from the patients themselves
In-clinic: Medical information is collected in specialty medical clinics attended by amyloidosis patients.
Your information will be given a coded number. Scientists and other stakeholders studying amyloidosis may approach the registry steering committee to ask for access. If granted they will be able to obtain data for use in expanding their research studies, but they will not be able to access your identifying information.

You are also eligible to register for the online direct-to-patient registry portal. The clinical research team collects different information than the online portal. The information collected through the online portal aims to ensure your voice and perspective is considered when conducting research. If you would like to participate in the direct-to-patient portal, you will need to register and provide your consent online at www.amyloidosisregistry.ca.

Absolutely. 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. Research ethics boards have reviewed all procedures and protocols and will continue to monitor the functioning of the database.

Anyone with amyloidosis is eligible to participate. Enrolment 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 register and provide your consent. Please create an account by registering here and fill out and sign the consent form. If you have any questions, please contact us at info@amyloidregistry.com.

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
- Developing standards of care and improving adherence across the country
- Advocacy efforts of patient organizations
- Research to understand the quality-of-life impacts on patients and families
- Research to better understand amyloidosis
- Clinical research for new therapy development