The British Paediatric Surveillance Unit (BPSU) conducts surveillance of rare paediatric conditions using active, or prospective, case finding. The reliability of estimates of incidence, which is the primary outcome of public health importance, depends on ascertainment being as near complete as possible. This paper reviews evidence of the completeness of ascertainment in recent surveillance studies run through the BPSU. Ascertainment varied between 49% and 94% depending on the study. These are upper estimates. This was the basis of a discussion on barriers and facilitators of ascertainment which we have separated into factors related to the condition, factors related to the study methods, factors related to the study team and factors related to the surveillance system infrastructure. This leads to a series of recommendations to ensure continuing high levels of ascertainment in active surveillance studies.
Bibliografisk noteThis article has been accepted for publication in Archives of Disease in Childhood, 2019] following peer review, and the Version of Record can be accessed online at 10.1136/archdischild-2019-31740.
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