Surveillance for rare disorders by the BPSU
- 1Addenbrookes Hospital, Cambridge, UK (ex-chair, BPSU Executive Committee)
- 2Institute of Child Health, London, UK (current chair, BPSU Executive Committee)
- Correspondence to:
Dr C M Verity, Child Development Centre, Box 107, Addenbrookes Hospital, Hills Rd, Cambridge CB2 2QQ, UK;
- BPSU, British Paediatric Surveillance Unit
- CJD, Creutzfeldt-Jakob disease
- HUS, haemolytic uraemic syndrome
- MCAD, medium chain acyl coenzyme A dehydrogenase
- PIND, progressive intellectual and neurological deterioration
Why is it worthwhile?
The British Paediatric Surveillance Unit (BPSU) was set up in 1986 and has involved paediatricians in a pioneering mechanism for the surveillance of rare but important conditions that affect the health of children. Judged by its output the Unit has been very successful. By the end of 2001, 49 projects had been completed, resulting in over 150 publications in peer reviewed journals. The aim of this article is to examine the reasons for the success of the BPSU and to consider whether or not the activities of the Unit are worthwhile.
HOW DOES THE BPSU WORK?
The basic idea behind the Unit is simple enough.1 Investigators who want to perform surveillance studies apply to the BPSU Executive Committee for places on the BPSU surveillance card. Each month the BPSU office sends the orange surveillance card to over 2000 consultant paediatricians in the United Kingdom and Eire. The card lists the disorders currently under surveillance. If a child with one of these disorders has been seen during the previous month, the local paediatrician is asked to tick the appropriate box on the card and return it to the BPSU office. The office then tells the relevant surveillance group so that the paediatrician can be contacted to obtain the clinical details, usually by questionnaire. Data about patients are held securely by the surveillance groups and no information about individual patients is held by the BPSU.
WHY DOES THE BPSU WORK?
Support from key organisations
The following were involved in planning the BPSU: the British Paediatric Association (now the Royal College of Paediatrics and Child Health), the Communicable Disease Surveillance Centre at Colindale, the Institute of Child Health (London), the Royal College of Physicians (Ireland), and the Scottish Centre for Infection and Environmental Health. Representatives from all these organisations—and others—have remained in active contact by attending the monthly meetings of the BPSU …