3.8 Description Formats for Congenital Anomalies

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Methods

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
Selected
congenital
anomaly
1. Cleft lip		 Description/comments/details
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

Table of Contents

  1. Module 3: Introduction to Surveillance Approaches
  2. 3.1 Epidemiology
  3. 3.2 Population Coverage
  4. 3.3 Case Ascertainment
  5. 3.4 Case-Finding
  6. 3.5 Case Inclusion
  7. 3.6 Inclusion Criteria
  8. 3.7 Inclusion of Pregnancy Outcomes
  9. ›3.8 Description Formats for Congenital Anomalies
  10. 3.9 Core Ascertainment Variables
  11. 3.10 Data-Collection Methods and Tools
  12. 3.11 Data Collection/Management
  13. 3.12 Data-Management Protocol
  14. 3.13 Data Analysis
  15. 3.14 Data Dissemination
  16. 3.15 Evaluation Questions 3