The Canadian Chronic Disease Surveillance System (CCDSS) is a collaborative network of provincial and territorial surveillance systems supported by the Public Health Agency of Canada (PHAC).
In each province and territory, the health insurance registry database is linked to the physician billing and hospitalization databases using the health card number as a unique personal identifier. Where available and specified by the case definition, data from the prescription drug databases are also linked.
Case definitions are applied to these linked databases to identify individuals with chronic diseases/conditions, and aggregate data are sent to PHAC. The aggregate data are used by PHAC to estimate chronic disease/condition incidence, prevalence, all-cause mortality and use of health services.
The start year for reporting CCDSS data varies by disease/condition. The determination of the first reported year aims to allow enough time to capture all prevalent cases, given the parameters of the disease/condition specific case definition, and to ensure previously prevalent cases are excluded from incident cases.
Diseases and conditions
In the current edition of the CCDSS Data Tool, the most recent year of data available varies. Indeed, data were not collected for every disease/condition during the last data collection cycle (2019). Table 1 outlines the latest year of data available for each disease/condition.
Definitions of terms
Age-specific estimate/rate: Incidence, prevalence and all-cause mortality estimates/rates calculated for a specific life-course age group (i.e., 1-19, 20-34, 35-49, 50-64, 65-79, 80+), using counts randomly rounded either up or down to a multiple of 10 (see random rounding).
Age-standardized estimate/rate: Incidence, prevalence and all-cause mortality estimates/rates age-standardized to the 2011 Canadian population in order to adjust for differences in population age structure, calculated using non-rounded counts and five-year age groups.
Case definition: CCDSS disease/condition specific case definitions are applied to identify individuals with the disease/condition (cases). Refer to the accompanying case definition documentation for the disease/condition specific criteria used, including the codes from the 9th or 10th edition of the International Classification of Disease (ICD), Canadian Classification of Health Interventions (CCI) and Canadian Classification of Diagnostic, Therapeutic and Surgical Procedures (CCP).
Coefficient of variation (CV): A measure used to describe the precision of an estimate/rate. More specifically, the CV of an estimate/rate is the ratio of the standard error of the estimate/rate to the estimate/rate itself. Estimates/rates with a CV between 16.6% and 33.3% should be interpreted with caution and those with a CV greater than 33.3% are not reported.
Confidence interval (CI): A statistical measurement of the reliability of an estimate/rate. The size of the CI relates to the precision of the estimate/rate, with narrow CIs indicating greater precision than those that are wide. The 95% CI shows an estimated range of values that is likely to include the true value 19 times out of 20.
Crude estimate/rate: Incidence, prevalence and all-cause-mortality estimates/rates calculated using counts randomly rounded either up or down to a multiple of 10 (see random rounding).
Fiscal year: CCDSS data are reported by fiscal year, April 1 to March 31.
Incidence rate: The number of new cases of a disease/condition occurring in a given time period in a population at risk, expressed as a rate.
Life-course age groups: The sequence of age categories individuals pass through as they age from childhood to older adult. The categories used for CCDSS reporting are: 1-19, 20-34, 35-49, 50-64, 65-79, 80+.
Mortality (all-cause) rate: The number of deaths from any cause occurring in a given time period, expressed as a rate.
Mortality (all-cause) rate ratio: The all-cause mortality rate among individuals with the disease/condition (cases) divided by the all-cause mortality rate among individuals without the disease/condition (non-cases). In CCDSS data reporting, these rates are age-standardized to account for the different age distribution between cases and non-cases. A rate ratio greater than one indicates that cases experience a higher mortality burden compared to non-cases, regardless of the cause of death. Assuming the baseline age-standardized mortality rates between cases and non-cases are similar, the difference in all-cause mortality can be attributed directly or indirectly to the disease/condition.
Prevalence estimate: The number of cases of a disease/condition occurring in a given time period in a population, expressed as a proportion. In the CCDSS Data Tool, prevalence may be reported over three different periods: annual (cases identified during one year), cumulative (cases identified during the capture period) and active (a subset of cumulative prevalence cases that meet the active prevalence criteria).
Before estimates/rates are calculated, the following data procedures are applied.
Age group aggregation for age-specific estimates/rates
Data submitted by provinces and territories by five-year age groups are aggregated using the following life-course age groups: 1-19, 20-34, 35-49, 50-64, 65-79 and 80+ with a few exceptions:
- For parkinsonism including Parkinson disease, osteoporosis, osteoporosis-related fractures and heart failure, the first age group is 40-49;
- For schizophrenia, the first age group is 10-19;
- For rheumatoid arthritis, the first age group is 16-34; and
- For juvenile idiopathic arthritis, only one age group is used, i.e. 0-15.
Estimates, rates and rate ratios are not reported when the corresponding counts are less than 10 or the coefficients of variation are greater than 33.3%.
To protect data confidentiality and avoid residual disclosure, crude estimates/rates are calculated using randomly rounded counts. All provincial/territorial and Canadian counts 10 or greater are randomly rounded either up or down to a multiple of 10. Random rounding is only used to calculate crude estimates/rates. Age-standardized estimates/rates are based on non-rounded counts.