New Patient Reported Registry Launched Targeting Amyloidosis in Canada

Calgary, AB – February 8, 2022 – In partnership with the Canadian Registry for Amyloidosis Research (CRAR) at the University of Calgary and University of British Columbia, Lumiio is pleased to announce that multi-disciplinary amyloidosis researchers across Canada have come together to launch a Canada-wide patient registry with both clinical and patient-reported data. This registry is a digital tool that will capture important information on the health of individuals diagnosed with amyloidosis. The data will be used to improve resources available and quality of care for patients.  By registering, patients can help improve care for individuals affected by amyloidosis and learn how to participate in important research. 

Amyloidosis is a rare disease that occurs when an abnormal protein, called amyloid, builds up in the organs and interferes with their normal function.  There are numerous variations of amyloidosis – some are hereditary, and others can be caused by aging or other factors. While there are no estimates of how many people in Canada have each form of amyloidosis in Canada, there are an estimated 50,000 people worldwide diagnosed with hereditary amyloidosis.

Anyone with amyloidosis is eligible to participate. Enrollment is voluntary, confidential, and free of charge with the option to drop out at any time.  Information can be entered directly by patients as frequently as they like and may be used to develop standards of care, increase advocacy efforts of patient organizations, contribute to research to understand the quality-of-life impacts on patients and families, and accelerate clinical research for new therapy development. Access to collected information is strictly controlled through an approval process to protect patient privacy.

To learn more about the registry, reach out to


Lumiio is a global digital health company that specializes in real-world data collection services that drive health outcomes. Lumiio connects stakeholders in health communities by aligning interests and working towards the common goal of improving solutions for diagnostics, treatment, and care. At Lumiio, the social science leads the data science by combining classical research methods with innovative technologies and digital strategies. Lumiio does not own the data generated by their programs and take a ‘people first’ approach to instill trust in all stakeholders involved in the collection of data and delivery of new treatments.

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