Canadian Registry for Amyloidosis Research

Summary

WHAT IS A REGISTRY AND WHAT IS ITS PURPOSE?
A registry is a research tool that collects information on 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 Registry for Amyloidosis Research is a Canada-wide registry that captures information from people diagnosed with amyloidosis. Information is then used in a variety of ways to improve amyloidosis care.

HOW DOES IT WORK?
Direct-to-patient: Information on quality of life 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.

HOW IS THE INFORMATION USED?
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