ARCHIVED: Appendix A: Congenital anomalies surveillance in Canada: results of a 2006-2007 survey on availability of selected data variables in Canadian provinces and territories – Recommended data variables
Appendix A
Recommended Data Variables for Congenital Anomalies Surveillance in Canadian Provinces & Territories
To promote the development and enhancement of surveillance systems for congenital anomalies in Canadian provinces and territories, the Canadian Congenital Anomaly Surveillance Network (CCASN) specified three objectives: (1) to identify sources of ascertainment, and data available from these sources, in each jurisdiction; (2) to determine the minimal data necessary for: (a) linkage between the sources and (b) provincial/territoriallevel surveillance; and, (3) to identify data additional to the minimal set that would enhance the value of the system in service planning and research.
In relation to the second and third objectives, the Demographic and Risk Indicators Working Group of the CCASN reviewed existing practices and recommendations for data collection from surveillance systems in Canada, the United States and Europe, and relevant scientific literature identified from an environmental scan. Key issues included:
- enabling linkage of multiple sources of ascertainment, as this has been shown to be crucially important in maximizing comparability of data over time within and between jurisdictions;
- collection of information on the diagnosis and information relevant to the interpretation of the diagnosis (such as sex, birth weight, gestation, plurality and contact information for responsible party); and,
- the ability to conduct surveillance by time, place and maternal characteristics.
For each variable, the group considered both the importance of the variable and the feasibility of collecting the data. The resulting list of variables is organized into two categories:
- Minimum data variables deemed necessary to meet provincial/territorial program objectives (Table 1); and
- Recommended data variables which can enhance the capacity of the system (Table 2).
| No. | Data Variable Name | Data Format | Data Usage |
|---|---|---|---|
| Personal Identification and Administrative Information | |||
| Infant/Fetus | |||
| 1 | Personal (unique) health number (PHN) | Char 9 or other | Unique ID for linkage |
| 2 | Birth registration number (BRN) | Char 11 | Unique ID in Vital Stat |
| 3 | Date of birth/termination | mm/dd/yyyy | Linkage and age calculation |
| 4 | Place of birth | Text | Analysis and reporting |
| 5 | Hospital ID of birth | Char 12 | Linkage and identification |
| 6 | Death registration number (DRN) | Char 11 | Unique ID in Vital Stat |
| 7 | Date of death | mm/dd/yyyy | Linkage and survival analysis |
| 8 | Place of death | Text | Analysis and reporting |
| 9 | Live/stillbirth or termination flag | Char 2 | Linkage and analysis |
| 10 | Sex | Char 1 | Linkage and analysis |
| 11 | Family name | Char 50 | Linkage and identification |
| 12 | First name | Char 40 | Linkage and identification |
| 13 | Middle name | Char 50 | Linkage and identification |
| Mother | |||
| 14 | Personal health number (PHN) | Char 9 or other | Unique ID for linkage |
| 15 | Date of birth | mm/dd/yyyy | Linkage and age calculation |
| 16 | Family name | Char 50 | Linkage and identification |
| 17 | Maiden name | Char 50 | Linkage and identification |
| 18 | First name | Char 40 | Linkage and identification |
| 19 | Middle name | Char 50 | Linkage and identification |
| 20 | Residence postal code at delivery | Char 7 | Linkage and analysis |
| 21 | Residence standard geographic code | Char 7 | Linkage and analysis |
| 22 | Residence health region | Char 2 | Linkage and analysis |
| Case Ascertainment and Reporting | |||
| 23 | Source of report | Char 7 | Analysis and reporting |
| 24 | Name/code of reporting agency | Text | Analysis and reporting |
| 25 | Single or multiple anomalies | Char 1 | Analysis and reporting |
| 26 | Syndrome flag | Yes No | Analysis and reporting |
| 27 | Diagnostic code(s) (ICD-10-CA, ICD-9-CM) | Char 7 | Analysis and reporting |
| 28 | ICD version indicator | 09 vs. 10 | Analysis and reporting |
| 29 | Baby's birth weight (g) | Numeric | Analysis and reporting |
| 30 | Gestational age (weeks) | Numeric | Analysis and reporting |
| 31 | Plurality (singleton, twins, ...) | Char 2 | Analysis and reporting |
| 32 | Date of reporting | mm/dd/yyyy | Analysis and reporting |
| Contact Information | |||
| 33 | Name of responsible party (physician...) | Text | |
| 34 | Mailing address of responsible party | Text | |
| 35 | Tel and fax number of responsible party | Numeric | |
| 36 | Email address of responsible party | Text | |
| No. | Data Variable Name | Data Format | Data Usage |
|---|---|---|---|
| Personal Identification and Administrative Information | |||
| 37 | Baby's name change flag | Char 1 | Linkage and identification |
| 38 | Adopted name (AKN) | Text | Linkage and identification |
| 39 | Mother's hospital chart ID | Char 12 | Linkage and identification |
| 40 | Mother's mailing address at birth or termination | Text | Linkage and identification |
| 41 | Mother's place/country of birth | Text | Analysis and reporting |
| 42 | Marital status of mother | Char 2 | Analysis and reporting |
| 43 | Immigrant from other country (mother) | Yes No | Analysis and reporting |
| 44 | Mother's ethnicity | Char 2 | Linkage and analysis |
| 45 | Father's date of birth | mm/dd/yyyy | Linkage and age calculation |
| 46 | Father's ethnicity | Char 2 | Linkage and analysis |
| Diagnostic Information | |||
| Infant/Fetus | |||
| 47 | Text description of birth defect | Text | Analysis and reporting |
| 48 | Birth length (cm) | Numeric | Analysis and reporting |
| 49 | Weight centile | Numeric | Analysis and reporting |
| 50 | Head circumference (cm) | Numeric | Analysis and reporting |
| 51 | Apgar score | Numeric | Analysis and reporting |
| 52 | Birth order | Numeric | Analysis and reporting |
| 53 | Cytogenetic analyses performed | Yes No | Analysis and reporting |
| 54 | Diagnostic tests and procedures performed | Yes No | Analysis and reporting |
| 55 | Autopsy performed | Yes No | Analysis and reporting |
| 56 | Date of diagnosis or test(s) | mm/dd/yyyy | Analysis and reporting |
| Mother | |||
| 57 | Medical record number(s) | Char 12 | Linkage and identification |
| 58 | Receiving prenatal care flag | Yes No | Analysis and reporting |
| 59 | Participate prenatal class flag | Yes No | Analysis and reporting |
| 60 | Number of prenatal visits | Numeric | Analysis and reporting |
| 61 | Date of last menstrual period (LMP) | mm/dd/yyyy | Analysis and age calculation |
| 62 | Number of ultrasounds:
|
|
|
| 63 | Mother's pre-pregnancy weight (kg) | Numeric | Analysis and reporting |
| 64 | Mother's height (cm) | Numeric | Analysis and reporting |
| 65 | Number of pregnancies (including current pregnancy) | Numeric | Analysis and reporting |
| 66 | Parity | Numeric | Analysis and reporting |
| 67 | Number of pregnancy loses in
|
Numeric | Analysis and reporting |
| 68 | Maternal conditions:
|
|
Analysis and reporting |
| 69 | Pregnancy complications:
|
|
Analysis and reporting |
| 70 | Mode of delivery (vaginal vs. cesarean) | Vag. , CD | Analysis and reporting |
| 71 | Complications of delivery:
|
|
Analysis and reporting |
| 72 | Prenatal screening:
|
|
Analysis and reporting |
| Parental Social Class and Socio-economic Information | |||
| 73 | Mother's education:
|
|
Analysis and reporting |
| 74 | Mother on social-family welfare flag | Yes No | Analysis and reporting |
| 75 | Mother on health care subsidy flag | Yes No | Analysis and reporting |
| 76 | Mother's occupation at conception | Text | Analysis and reporting |
| 77 | Father's occupation at conception | Text | Analysis and reporting |
| Parental Risk or Protective Factors | |||
| 78 | Maternal alcohol use prior/during pregnancy | Yes No | Analysis and reporting |
| 79 | Prescription drug use during pregnancy | Yes No | Analysis and reporting |
| 80 | Non-prescription drug use prior/during pregnancy | Yes No | Analysis and reporting |
| 81 | Maternal smoking prior/during pregnancy | Yes No | Analysis and reporting |
| 82 | Other maternal exposure:
|
|
Analysis and reporting |
| 83 | Family history of malformations | Yes No | Analysis and reporting |
| 84 | Family history of genetic diseases | Yes No | Analysis and reporting |
| 85 | Use of folic acid at conception | Yes No | Analysis and reporting |
Notes:
- Coding for missing values should be added to all variables; code "9" for character variables and "." for numeric variables.
- Personal Health Number, Inpatient Chart Number and other medical record numbers may vary by province/territory, thus data from each jurisdiction may need to be analyzed separately.
- Data on use of alcohol, drug, and smoking are self-reported and may be under-reported; some variables are collected for administrative purposes. Caution in interpretation should always be exercised.
- Coding standards should be developed for all variables. Statistics Canada's data classification and coding may be used as a reference.
Page details
- Date modified: