Canadian Childhood Cancer Surveillance and Control Program
Description: This bank contains information about Canadian children under age 20 years diagnosed with cancer from 1995 on. Data are collected via questionnaire and clinical chart review. Information collected from 1995 to 2000 includes name, address, telephone number of the patient and the parent or legal guardian and health insurance number. Information collected 2001 onward does not include the above information. Other information includes diagnostic, treatment, and clinical outcome data.
Class of Individuals: Canadian children aged 20 or less at time of diagnosis with cancer as identified via pediatric oncology centers or via provincial cancer registries, and who agree to participate in study.
Purpose: To facilitate development of prevention and control strategies, and to assess risk factors and to minimize long-term consequences.
Consistent Uses: For surveillance analysis. Information may be used to contact these individuals in follow-up surveys except after 2001, where the pediatric oncology centre will take responsibility of contacting individuals.
Retention and Disposal Standards: Retained a minimum of 10 yrs, and then reviewed for possible transfer to Library and Archives Canada (excluding questionnaires which may be destroyed after 2 yrs).
RDA Number: To be determined.
Related Record Number: PHAC 008 336
TBS Registration: 004092
Bank Number: PHAC PPU 082

Canadian Communicable Disease Surveillance System
Description: This bank contains information provided by provincial health departments relating to socio-demographic characteristics of the patients, diagnostic information and treatment history.
Class of Individuals: The information relates to individuals with a diagnosed occurrence of a notifiable communicable disease.
Purpose: The purpose of this bank is to provide a database to monitor the incidence of notifiable communicable diseases for use in epidemiological studies in support of disease control and prevention measures.
Consistent Uses: None.
Retention and Disposal Standards: Retained a minimum of 10 yrs, and then transferred to Library and Archives Canada (excluding questionnaires which may be destroyed after 2 yrs).
RDA Number: To be determined.
Related Record Number: PHAC 008 172
TBS Registration: 004093
Bank Number: PHAC PPU 078

Canadian Congenital Anomalies Surveillance System
Description: The bank contains information on incidence of birth defects in Canada. Participating provinces provide machine readable information including the date of birth, sex, nature of birth defects, municipality of residence and a provincial registration number. The system was initiated in 1966.
Class of Individuals: All infants born in participating provinces and diagnosed as having a birth defect in the first year of life since 1973.
Purpose: The purpose of this data bank is to provide a database to monitor the incidence of birth defects in Canada and to serve as a register for epidemiological research studies.
Consistent Uses: Use of this bank is consistent with the purpose specified in section 5.
Retention and Disposal Standards: Retained a minimum of 10 yeas, and then reviewed for possible transfer to Library and Archives Canada (excluding questionnaires which may be destroyed after 2 years).
RDA Number: To be determined.
Related Record Number: PHAC 008 172
TBS Registration: 004111
Bank Number: PHAC PPU 075

Canadian Hospitals Injury Reporting and Prevention Program
Description: This bank contains information provided by injured persons and by the hospitals at which they were seen. The following personal information is in the bank: the hospital name, injured person's medical record number, date of birth, sex and postal code and the first three letters of the individual's family name. In addition there is information on the circumstances in which the injury occurred, the nature of the injury and how the case was handled in the emergency room.
Class of Individuals: The information relates to individuals who seek care for injuries or poisoning at one of 10 pediatric and 6 general hospitals that participate in the program.
Purpose: The purpose of this bank is to provide an ongoing surveillance of the circumstances in which injuries occur and, by making the information available to those who develop and evaluate injury prevention programs, to make an important contribution to reducing the number and severity of injuries in Canada.
Consistent Uses: A postal code conversion program developed at Statistics Canada will permit linkage of CHIRPP data with grouped census data and analysis of the associations of socio-demographic factors with injuries.
Retention and Disposal Standards: The files are retained for 100 years.
RDA Number: To be determined.
Related Record Number: PHAC 008 328
TBS Registration: 003452
Bank Number: PHAC PPU 066

Canadian Surveillance for Creutzfeldt - Jakob disease (CIDPC)
Description: This data will be collected about people with Creutzfeldt-Jakob disease and persons who do not have Creutzfeldt-Jakob disease (controls) by reviewing their clinical records for clinical information and for information about exposure to blood or certain procedures. Additional information will be collected by interviews with the family, by collecting blood samples for genetic tests and by collecting neuropathology samples after death.
Class of Individuals: All persons who are suspected to have developed Creutzfeldt-Jakob disease and their controls, recruited through physicians from hospitals and the local community.
Purpose: To determine the risk of acquiring Creutzfeldt-Jakob disease through blood transfusions; to determine if there is any unusual forms of Creutzfeldt-Jakob disease as seen in England following the bovine spongiform encephalopathy (mad cow disease) epidemic.
Consistent Uses: None.
Retention and Disposal Standards: To be determined.
RDA Number: To be determined.
Related Record Number: PHAC 008 401
TBS Registration: 004904
Bank Number: PHAC PPU 286

Canadian Tuberculosis Reporting System
Description: Contains information collected and provided to the Public Health Agency of Canada (formerly Health Canada) since 1996 and data provided to Statistics Canada from 1970 - 1995 by provincial and territorial public health authorities on persons reported with TB disease (new active or relapsed cases). Data may include reporting province/territory, gender, age, date of birth, birthplace, activity status, HIV status, drug resistance, treatment outcomes (including death and cause of death, compliance and whether or not treatment was directly observed) and drug regimens.
Purpose: To support the prevention and control of tuberculosis. An annual report called "Tuberculosis in Canada" is published and is available in bilingual print version and on the Public Health Agency of Canada website.
Consistent Uses: Secondary analysis of sub-groups of the population (i.e., by ethnic origin or disease site) to further understanding of epidemiology of tuberculosis in Canada. Information may be provided to Statistics Canada and the Public Health Agency of Canada Notifiable Diseases On-line.
Retention and Disposal Standards: Report forms are retained a minimum of 10 yrs, then reviewed for possible transfer to Library and Archives Canada. Electronic version of data is retained in order to do time series analyses.
RDA Number: To be determined.
Related Record Number: PHAC 008 170
TBS Registration: 004112
Bank Number: PHAC PPU 087

Extraordinary Assistance Plan
Description: Contains applications, correspondence, medical records of applicants who became infected with the AIDS virus (HIV) who received blood or blood products as well as their first order relative (spouse/partner or child) who was secondarily infected with HIV; and to living thalidomide victims who were born in Canada and whose mothers took thalidomide during the first trimester of pregnancy.
Class of Individuals: Individuals or agents of their estates who have applied for benefits.
Purpose: To determine eligibility and administer financial benefits to HIV infected persons and thalidomide victims.
Consistent Uses: Information contained in these files is used to determine eligibility for receipt of financial benefits only.
Retention and Disposal Standards: The HIV files are retained for a minimum of 20 years after last activity on file and the thalidomide files for 100 years after last activity on file.
RDA Number: To be determined.
Related Record Number: PHAC 008 255
TBS Registration: 005078
Bank Number: PHAC PPU 039

Home Care Study
Description: This bank contains information about clients and formal and informal care providers of home care within Ottawa-Carleton. The data consists of a client code, postal code, age, gender, and diagnosis, reason for admission to home care, referral source, mother tongue, living arrangements, and relation to informal care provider. For informal care providers, data include the individual score on the Zarit Caregiver Burden Scale.
Class of Individuals: Formal and informal care providers and clients admitted to the Regional Municipality of Ottawa-Carleton Home Care Program.
Purpose: To gain a better understanding of the factors which influence access to home care services.
Consistent Uses: Pilot research project only.
Retention and Disposal Standards: Retained 25 yrs then transferred to Library and Archives Canada.
RDA Number: To be determined.
Related Record Number: PHAC 008 305
TBS Registration: 004089
Bank Number: PHAC PPU 090

Physical Activity Benchmarks Initiative
Description: The Physical Activity Unit provides contribution funding to the Canadian Fitness and Lifestyle Research Institute to monitor and track population physical activity levels, factors which influence physical activity at the individual, organization and systemic levels (i.e., settings and environments), capacities of governments and partners to act, and the outcomes of joint action. The Physical Activity Benchmarks Initiative informs Federal/Provincial/Territorial decision-making and provides the basis for progress reports to Ministers vis-à-vis their target to increase the physical activity levels of Canadians by 10 percentage points in each Province and Territory by 2010.
Class of Individuals: Individual Canadians and professionals in the physical activity community.
Purpose: The primary purpose of the program is to track physical activity levels of Canadians and factors which influence physical activity. The data is used to develop policy and program strategies aimed at increasing physical activity levels of Canadians.
Consistent Uses: None.
Retention and Disposal Standards: Retained 10 yrs, then transferred to Library and Archives Canada.
RDA Number: To be determined.
Related Record Number: PHAC 008 420
TBS Registration: 005079
Bank Number: PHAC PPU 235

Physician Asthma Management Study
Description: The former Laboratory Centre for Disease Control (LCDC) of Health Canada commissioned a national survey of physicians on their asthma management practices prior to 1997. This survey comprises part of a national strategy that LCDC has undertaken in partnership with other members of the National Asthma Control Task Force. Questionnaires were sent to 4,489 physicians in Canada's ten provinces and two territories. Physicians were asked how often they used different method of diagnosis and follow-up and different medications for treatment of asthma in adults and children. These findings will be useful in targeting education interventions on certain topics of asthma management to specific groups of physicians.
Class of Individuals: Canadian physicians.
Purpose: To collect information on the variety and quality of asthma care and education in Canada; to provide advice to the National Asthma Control Task Force
Consistent Uses: None.
Retention and Disposal Standards: Retained a minimum of 10 yrs, and then reviewed for possible transfer to Library and Archives Canada.
RDA Number: To be determined.
Related Record Number: PHAC 008 317
TBS Registration: 004106
Bank Number: PHAC PPU 086

Spousal Determinants in Delayed Response to Chest Discomfort Survey
Description: The telephone survey contains information on how a woman would respond if her partner consulted her regarding chest discomfort. Personal information will only be collected on those individuals who agree to participate in future surveys on the same subjects. Personal identifiers collected will include name, address, age, and telephone number.
Class of Individuals: Respondents are randomly selected adult women chosen by telephone number in Ottawa-Carleton.
Purpose: Future surveys on delay determinants would be enhanced if repeated on the same individuals to examine changes over time or after community targeted interventions.
Consistent Uses: To match an individual's response from the first survey to subsequent surveys.
Retention and Disposal Standards: Retained a minimum of 10 yrs, and then reviewed for possible transfer to Library and Archives Canada (excluding questionnaires which may be destroyed after 2 yrs).
RDA Number: To be determined.
Related Record Number: PHAC 008 404
TBS Registration: 004108
Bank Number: PHAC PPU 091

Student Lung Health Survey
Description: In 1995-96, a school-based survey of asthma was conducted in nine volunteer health units across Canada, targeting 5 to 19 year-olds enrolled in school. The objectives were to examine asthma prevalence, incidence, severity, associated risk factors, management and treatment practices, the utilization of health services and the prevalence of allergies. Approximately 39,800 students received the Screening Questionnaire through the classroom teacher in the elementary schools or by mail-out to their home for high school students. An in-depth Asthma Telephone Interview (ATI) was conducted within the previous twelve months of this survey with those who had previously been diagnosed with asthma.
Class of Individuals: The information relates to individual who participated in the study.
Purpose: To collect enhanced surveillance data on current asthmatic and asthma-like students. This is needed for the planning and implementation of effective asthma control programs in Canada.
Consistent Uses: Respondents may be contacted in the future to provide other health related information. This information may be shared with other programs within Health Canada. The public health units will retain the original questionnaires and data for their own health services delivery.
Retention and Disposal Standards: Retained a minimum of 10 yrs, and then reviewed for possible transfer to Library and Archives Canada (excluding questionnaires which may be destroyed after 2 yrs).
RDA Number: To be determined.
Related Record Number: PHAC 008 317
TBS Registration: 004110
Bank Number: PHAC PPU 081

Traveler Illness Reports
Description: The Traveler Illness Report form will collect information on an individual who arrives ill at a port of entry (airport, seaport, border crossing, etc.) as well as when needed, other passengers in contact with the ill individual(s). Information collected include some, if not all, of the following: traveler's (or contact's) name, nationality, home address and phone number, address and phone number while in Canada (if different), transporter details (airline, ship, seat/cabin number, etc.), ill traveler's symptoms (high fever, coughing, rash, bleeding, etc.), travel history, particularly if there has been recent travel in a tropical country, if any, similar illness in travel companions preliminary diagnosis, if available, if the traveler is being referred to hospital for medical attention, details on the ambulance, hospital, immigration status of the ill individual (and if not Canadian, passport number), name and phone number of person reporting the ill traveler.
Class of Individuals: Travelers arriving at a Canadian port of entry who exhibit two or more symptoms of illness.
Purpose: The Traveler Illness Report form is used to document arriving ill individuals and their contacts in order to determine the amount of illness among travelers and to proactively identify unusual incidences of diseases overseas as well as to facilitate tracing of passengers in the event of an outbreak of diseases of significance.
Consistent Uses: Nominal information collected by the Traveler Illness Report form will not be matched with any other personal information bank. Data on countries visited and symptoms exhibited may be collected for research purposes. Disclosure of an individual's information will be limited, on a need-to-know basis, to appropriate port of entry personnel, the Public Health Agency of Canada quarantine officials, and, in the case of someone who requires further medical attention at a health care institution, medical staff, as well as immigration authorities, should the traveler not be Canadian.
Retention and Disposal Standards: Nominal and tracing information will be retained for at least two incubation periods of the suspected illness, to a maximum of three months, in order to ensure that there is no secondary spread of the illness. After abstraction of data on countries visited and symptoms for research purposes, the form will be retained for 2 years, and then destroyed.
RDA Number: To be determined.
Related Record Number: PHAC 008 276
TBS Registration: 004064
Bank Number: PHAC PPU 071