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 MitoCanada Patient Contact Registry is a Canada-wide registry that captures information from people diagnosed with mitochondrial diseases. Information that is collected can be used to help inform treatment development and understand the Canadian mitochondrial disease landscape.
WHY SHOULD I PARTICIPATE?
- The registry was designed to improve patient care in Canada and drive mitochondrial disease research. By participating you can:
- Help find meaningful treatments for mitochondrial disease
- Help improve care for individuals affected by mitochondrial disease
- Learn how to participate in important research
- Help improve access to new treatments
HOW DOES IT WORK?
- Information on the demographic information as well as health history is collected directly from the patients themselves. Your information will be given a coded number. Scientists and other stakeholders studying mitochondrial disease may approach the registry 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. If you are potentially eligible for a trial, the MitoCanada team will reach out to you directly.
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 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 mitochondrial diseases
- Clinical research for new therapy development
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.
WHAT IS "DE-IDENTIFIED DATA"?
- "De-identification” is the general term for the process of removing personal information from a record or collected information. De-identification protects the privacy of individuals because once de-identified, if this information is provided to someone they would not be able to link it back to you since there is no personal information included (Information and Privacy Commissioner of Ontario). Several different types of data are removed in order for data to become "de-identified" including but not limited to, Names, Geographic Subdivisions smaller than the first 3 digits of a Postal Code, Telephone Numbers, Fax Numbers, Email addresses, Social Security Numbers, Personal Health Numbers, Health Insurance Beneficiary Numbers, Account Numbers, Licence/Certificate Numbers, Device identifiers and Serial Numbers, URL's, IP Address Numbers, Biometric Identifiers, Full face photographic images, and any other unique identifying number characteristic, or code (Adapted from The Office of Human Subject Research, Johns Hopkins University Medicine, 2003).
WHO CAN PARTICIPATE?
- Anyone living in Canada with mitochondrial disease is eligible to participate. Enrolment is voluntary, confidential, and free of charge. You can withdraw at any time.
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.mitocanadapatientregistry.org and fill out and sign the consent form. If you have any questions, please contact us at email@example.com.