3.8 Description Formats for Congenital Anomalies

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This section focuses on the methods for describing congenital anomalies in the data-collection process. Poor descriptions will negatively affect data quality.

There are two methods for describing congenital anomalies in data-collection tools: verbatim descriptions and checkboxes.

  • Verbatim descriptions allow for more detail, which may be necessary for accurate diagnosis.
  • Checkboxes alone might limit data quality. It is more useful to include further options for categorizing congenital anomalies. For example, if a country has the resources to collect data electronically, a checkbox could be useful as a first step, and then a window could open into a drop-down menu with more options to categorize the congenital anomaly.

Group Discussion 3.7

Verbatim Description Format
1. Cleft lip
Baby born with unilateral, left cleft lip; palate is intact. Baby also has microcephaly and clenched hands.


Checkbox Format
Neural tube defects:
☐ Anencephaly
☐ Encephalocele
☐ Spina bifida
Orofacial clefts:
☒ Cleft lip
☐ Cleft palate
☐ Cleft lip and palate
☒ Other

Possible responses:

  • These examples demonstrate how using verbatim descriptions can add more thorough information about a diagnosis.
  • Using only the checkbox format requires a programme to rely solely on the training and expertise of the member of staff who checked the box, to complete the form.
  • A checkbox format might facilitate data management; however, detailed information that would help with a diagnosis may be missed.
  • Elective terminations of pregnancy with fetal anomalies, also known as ETOPFA