The registry was designed to improve patient care in Canada and drive acromegaly research. By participating you can:
- Help find meaningful treatments for acromegaly
- Help improve care for individuals affected by acromegaly
- 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 acromegaly patients.
Your information will be given a coded number. Scientists and other stakeholders studying acromegaly 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.

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

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 acromegaly 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 @ www.acromegalyregistry.ca and fill out and sign the consent form. If you have any questions, please contact us at info@acromegalyregistry.com.