Case ascertainment in active paediatric surveillance systems: a report from the British Paediatric Surveillance Unit Ascertainment Group

Richard M Lynn, Richard Reading, BPSU Ascertainment Group, Astrid Janssens (Member of author group)

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Abstract

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.

Original languageEnglish
JournalArchives of Disease in Childhood
Volume105
Issue number1
Pages (from-to)62-68
ISSN0003-9888
DOIs
Publication statusPublished - Jan 2020
Externally publishedYes

Bibliographical note

This 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.

© Authors (or their employer(s)) OR “© BMJ Publishing Group Ltd. Reuse of this manuscript version (excluding any databases, tables, diagrams, photographs and other images or illustrative material included where a another copyright owner is identified) is permitted strictly pursuant to the terms of the Creative Commons Attribution-Non Commercial 4.0 International (CC-BY-NC 4.0) http://creativecommons.org.

Keywords

  • BPSU
  • case ascertainment
  • disease surveillance
  • epidemiology
  • general paediatrics

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