5.3 Personnel Responsible for Diagnosing and Coding

Depending on how a congenital anomalies surveillance programme is set up, the coding of congenital anomalies may take place in a hospital or clinic, or at the central registry, based on the clinical information provided. It is important to train the hospital or clinic staff responsible for diagnosing and coding congenital anomalies. If coding is done at the hospital or clinic, it also is important and recommended that someone who is knowledgeable about congenital anomalies (e.g. a neonatologist, paediatrician, clinical geneticist or dysmorphologist) reviews and confirms the diagnosis and assigns the proper codes. Codes for, or specific descriptions of, congenital anomalies are then submitted to the central registry, where final review and verification of all codes reported by participating sites occurs.

Picture of Field epidemiology staff training a nurse on diagnosis and coding

Field epidemiology staff training a nurse on diagnosis and coding

Not every site will have personnel who are knowledgeable about congenital anomalies. If no knowledgeable staff member is available, it is suggested that coding be done at the central registry level. Having a description of a congenital anomaly that is as complete and thorough as possible, and that includes photographs with the description, will increase the likelihood that the reviewer at the registry will be able to assign an accurate code. It is important to remember, however, that a description that includes abbreviated words can easily be misunderstood or misinterpreted by the reviewer.

The reliability of coding can also be affected by the expertise of the personnel recording the information and the expertise of the surveillance staff reviewing the information.