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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 the resources available and the 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.
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WHY SHOULD I PARTICIPATE?
- 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
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HOW DOES IT WORK?
- 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.
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WHAT RESEARCH MIGHT BE DONE?
- 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
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WILL MY INFORMATION BE SECURE?
- 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.
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WHO CAN PARTICIPATE?
- Anyone with acromegaly is eligible to participate. Enrollment is voluntary, confidential, and free of charge. You can withdraw at any time.
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HOW DO I REGISTER?
- If you would like to participate in the registry, you will need to register and provide your consent. Please create an account by registering at www.acromegalyregistry.ca and fill out and sign the consent form. If you have any questions, please contact us at info@acromegalyregistry.ca.