Appendices

Appendix H: Potential core variables

The abstraction form can be modified according to the needs of each country. The explanation and instructions that follow can be reviewed accordingly.

The instructions for the abstraction form will help personnel participating in the congenital anomaly surveillance system to clarify doubts about how to fill in the form. Please review the variable column (third column) and the explanation column (fourth column) before completing the form.

Column 1: variable number; useful when designing the database

Column 2: different variable categories

Column 3: variable name

Column 4: instructions for completing the abstraction form for each particular variable

Report

Report
Variable number Category Variable name Instructions Report
1 Case record identification Each case has a unique identification number. Each country can decide how to create the code, for example, the year and month the baby was born can be part of the unique identification.
2 Date of report Indicate the date when surveillance staff complete the form; report the day, month and year.
3 Name of health facility Indicate the name of the hospital where the fetus or neonate with a congenital anomaly was identified.
4 City, province, state or territory Indicate the city, province, state or territory where the delivery took place.

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Father

Father
Variable number Category Variable name Instructions Report
5 Identification information and demographic Name(s) Indicate the father’s given name(s) and family name(s), depending on what is commonly used in the country.
6 Father’s date of birth, or age if date of birth is not available Indicate the father’s date of birth. If known, please follow the same system as used in the date of report: day, month and year. If only the year is available, use year; if only age is available, use age.
7 Race and ethnicity Indicate the father’s race and ethnicity, if applicable.

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Mother

Mother
Variable number Category Variable name Instructions Report
8 Identification information and demographic information Name(s) Indicate the mother’s given name(s) and family name(s), depending on what is commonly used in the country. Make sure to include her maiden name.
9 Mother’s date of birth, or age if date of birth is not available Indicate the mother’s date of birth. If known, please follow the same system as used in the date of report: day, month and year. If only the year is available, use year; if only age is available, use age.
10 Race and ethnicity Indicate the mother’s race and ethnicity, if applicable.
11 Primary address during pregnancy Indicate the primary address for the mother during pregnancy.
12 Current address Indicate the maternal residence at the time of delivery, such as department and municipality. Use available country coding.
13 Telephone number Indicate the telephone number where the mother can be contacted.

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Obstetric history

Obstetric history
Variable number Category Variable name Instructions Report
14 Total number of pregnancies Indicate the total number of previous pregnancies: live births, stillbirths (fetal deaths), spontaneous abortions, and terminations of pregnancy.

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Fetus/neonate

Fetus/neonate
Variable number Category Variable name Instructions Report
15 Identification information and demographic information Name, if available Indicate the fetus or neonate’s given name and family name(s), depending on what is commonly used in the country.
16 Date of birth Indicate the fetus or neonate’s date of birth. If known, please follow the same system as used in the date of report: day, month and year.
17 Sex Indicate the sex of the fetus or neonate, if it is known. In case of ambiguous genitalia, indicate as “ambiguous”; if sex cannot be determined during the autopsy, please indicate as “unknown”.
18 Date of diagnosis Indicate the date of diagnosis of congenital anomaly/anomalies; write the date as indicated: day, month and year.
19 Outcome at birth Indicate whether pregnancy resulted in a live birth, fetal death, spontaneous abortion or termination of pregnancy.
20 Gestational age Write the gestational age in weeks; estimate the number of weeks based on the first day of the last normal menstrual period or on a sonogram done during the first trimester, if the information is available.

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Birth measurement

Birth measurement
Variable number Category Variable name Instructions Report
21 Weight Register the fetus’ or neonate’s weight in grams. If the fetus or neonate was stillborn, document the weight (use grams if grams are used in the country).
22 Length Register the length in centimetres and use a comma to separate decimals.
23 Head circumference Register the head circumference in centimetres and use a comma to separate decimals.
24 Multiple birth (birth order) Indicate if the birth was multiple and, if yes, the birth order of the fetus or neonate with a congenital anomaly/anomalies. Complete a form for each fetus or neonate if more than one has a congenital anomaly. Complete only one form if the babies are conjoined twins.
25 Photographs taken If possible, take at least three photographs: (i) the whole fetus or neonate; (ii) the fetus or neonate’s front and back; and (iii) the congenital anomaly/anomalies. Refer to Appendix J for information on taking photographs.
26 Parental consanguinity Indicate any biological relationship between the parents.
27 If the neonate was born alive and died, include date of death Write the date as indicated: day, month and year.
28 Autopsy results Indicate if an autopsy was performed and if the autopsy findings add to the diagnosis of the congenital anomaly. This information can go on the back of the form.
29 Congenital anomaly/anomalies present Write the name(s) of the congenital anomaly/anomalies; list all congenital anomalies present.
30 Describe in detail each congenital anomaly Provide a full description for each congenital anomaly identified.
31 Code Code the congenital anomaly according to the International classification of disease and related health problems, 10th revision 12.
32 C or P Indicate whether the diagnosis is confirmed (C) or possible (P) and whether more tests are needed.
33 Diagnostic tests performed or pending; notes and comments Indicate what tests were performed or are needed. Include any other relevant comments.

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Hospital information

Hospital information
Variable number Category Variable name Instructions Report
34 Name and profession of individual completing the form Identify the name and the profession of the individual completing the form.
35 Contact information Indicate a name and telephone number if more information is needed to complete the form.

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