Surveillance of rare diseases: a public health evaluation of the British Paediatric Surveillance Unit.

ABSTRACT

BACKGROUND: The British Paediatric Surveillance Unit (BPSU), a joint undertaking between the Royal College of Paediatrics and Child Health, Institute of Child Health and Health Protection Agency, undertakes nationwide surveillance of rare paediatric disorders. In 2007-09, formal evaluation to examine its effectiveness commenced. METHODS: Centres of Disease Control guidelines for appraising public health surveillance systems were applied. Data sources included BPSU databases, published and unpublished reports. Questionnaires were sent to 600 participating paediatricians and 27 researchers. Half of the questionnaires were administered online to assess the feasibility of electronic reporting. RESULTS: Three thousand UK paediatricians report monthly to the BPSU (94% return) and eighty BPSU studies have been published. These studies have influenced immunization and screening policy, altered clinical practice and informed health service configuration. Surveillance operations are simple, stable, representative and responsive to changing demands. Returns from the paediatricians' survey were 75%; investigators 89%. Paediatricians valued the BPSU and did not find participation burdensome. Most supported online questionnaires (56%) but not monthly electronic reporting (35%). CONCLUSIONS: Evaluation demonstrated the effectiveness of the BPSU as a valuable resource for clinicians and policy-makers. Opportunities identified for future development include secure online reporting, improved responsiveness to urgent health threats and promoting public involvement.