Data collected in The Canadian PKU Registry
The Canadian PKU Registry collects several different types of information about participants and their caregivers, such as:
Demographic Information
(Caregiver & Participant)
Demographic information refers to characteristics that help to describe the group of patients and caregivers who participate in the patient registry. It provides insights into the group's composition, for example, by age, gender, education, income, occupation, race or ethnicity, marital status, and geographic location.
Patient/Caregiver-Reported Outcomes
Patient/Caregiver-reported outcomes are measures of a patient's health and well-being that are directly reported by patients themselves or by their caregivers. Patient/caregiver-reported outcomes usually capture information that is best known by patients themselves or by their caregivers rather than a health care provider (e.g., their quality of life). Caregiver-reported outcomes can also measure the caregiver's health and well-being.
Clinician-Reported Outcomes
Clinician-reported outcomes are measures of a patient's health or functional status that are reported by health care professionals, such as doctors, nurses, or other clinicians. These outcomes are typically based on the clinician's assessment and observations of the patient during a clinical encounter or treatment process.
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*Note: Clinician reported data will be added to the Registry at a later stage.
Who can access the data?
• Participants’ information will be kept confidential to protect their privacy.
• All data will be collected and stored securely in Canada.
• No information will be given to anyone outside of the individuals or organizations below or be made public without the participant’s consent.
• More information about data access can be found in the FAQ.