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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

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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:

  1. Minimum data variables deemed necessary to meet provincial/territorial program objectives (Table 1); and
  2. Recommended data variables which can enhance the capacity of the system (Table 2).
Table 1. Minimum Data Variables for Congenital Anomalies Surveillance in Canadian Provinces and Territories
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  
Table 2. Recommended Data Variables for Enhanced Congenital Anomalies Surveillance in Canadian Provinces and Territories
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:

  • 1st trimester
  • 2nd trimester
  • 0, 1-2, 3-4, 5+
  • 0, 1-2, 3-4, 5+
  
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

  • Stillbirth
  • Spontaneous abortion
  • Induced abortion
 Numeric Analysis and reporting
68

Maternal conditions:

  • Chronic hypertension
  • Pre-pregnancy diabetes
  • Maternal obesity
  • Pre-pregnancy heart disease
  • Pre-pregnancy renal disease
  • Blood-borne pathogens
  • Other (specify)
  • Yes No
  • Yes No
  • Yes No
  • Yes No
  • Yes No
  • HIV/AIDS, HBV, HCV, Other
  • Text
 Analysis and reporting
69

Pregnancy complications:

  • Pre-eclampsia
  • Pregnancy-induced hypertension
  • Gestational diabetes
  • Prenatal bleeding
  • Premature rupture of membranes
  • Pregnancy infections
  • Other (specify)
  • Yes No
  • Yes No
  • Yes No
  • Yes No
  • Yes No
  • Syphilis, Rubella, TB, Other
  • Text
 Analysis and reporting
70 Mode of delivery (vaginal vs. cesarean) Vag. , CD Analysis and reporting
71

Complications of delivery:

  • Prolonged labour
  • Shoulder dystocia
  • Forceps delivery
  • Birth asphyxia
  • Other (specify)
  • Text
  • Yes No
  • Yes No
  • Yes No
  • Text
 Analysis and reporting
72

Prenatal screening:

  • Down syndrome
  • Neural tube defects (NTDs)
  • Congenital metabolic disorders
  • Other defects (specify)
  • Other screening (specify)
  • Yes No
  • Yes No
  • Yes No
  • Text
  • Text
 Analysis and reporting
Parental Social Class and Socio-economic Information
73

Mother's education:

  • Highest university degree
  • Highest college degree
  • Trade certificate or diploma
  • Completed high school
  • Less than grade 12
  • Text
  • Text
  • Yes No
  • Yes No
  • Yes No
 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:

  • Environmental hazards
  • Occupational hazards
  • Radiations
  • Medications
  • Other (specify)
  • Yes No
  • Yes No
  • Yes No
  • Yes No
  • Text
 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:

  1. Coding for missing values should be added to all variables; code "9" for character variables and "." for numeric variables.
  2. 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.
  3. 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.
  4. Coding standards should be developed for all variables. Statistics Canada's data classification and coding may be used as a reference.

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