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.
- general paediatrics
- disease surveillance
- case ascertainment
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Contributors The two named authors collected the data from the ascertainment group, carried out the analysis and drafted the paper. The members of the BPSU Ascertainment Group participated in the meeting, contributed data and have reviewed versions of the manuscript. They have been asked to confirm their agreement to have their names published as collaborators.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Data are available publicly as shown in references or have been supplied by contributors and are acknowledged. Further access to the data if required can be supplied by applying to either of the named authors.
Collaborators Members of the BPSU Ascertainment Group: Adams N—Public Health England. Avis J—British Paediatric Surveillance Unit. Barker L—Leeds General Infirmary. Bedford H—Institute of Child Health, University College London. Eke H—University of Exeter Medical School. Foot B—British Ophthalmology Surveillance Unit. Francis K—National Surveillance of HIV in Pregnancy and Childhood. Hunter L—Royal College of Paediatrics and Child Health. Irwin A—British Paediatric Allergy Immunology and Infectious Disease Group . Janssens A—University of Exeter Medical School. Knowles R—Institute of Child Health, University College London. Ladhani S—Public Health England. Lynn RM—British Paediatric Surveillance Unit. Michie C—Royal National Orthopaedic Hospital. Oeser C—Public Health England. Peters H—National Surveillance of HIV in Pregnancy and Childhood. Philbin M—Royal College of Paediatrics and Child Health. Powell A—Addenbrookes Hospital, Cambridge. Reading R—British Paediatric Surveillance Unit. Samad L—Institute of Child Health, University College London. Simms I—Public Health England. Simpson M—Royal College of Paediatrics and Child Health. Stevens S—National Congenital Anomalies and Rare Disease Registration Service. Tookey P—Institute of Child Health, University College London. Verity C—Addenbrookes Hospital, Cambridge. te Water Naude J—Welsh Paediatric Surveillance Unit. Winstone AM—Addenbrookes Hospital, Cambridge. Wood R—NHS National Services Scotland, Information Services Division.
Patient consent for publication Not required.
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