Canadian Acromegaly Registry

Summary

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 Acromegaly Registry is a Canada-wide registry that captures information from people diagnosed with acromegaly. Information is then used in a variety of ways to improve acromegaly care.
HOW IT WORKS?
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 acromegaly patients.
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 acromegaly
• Clinical research for new therapy development