Literature DB >> 21852323

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

Rachel L Knowles1, Helen Friend, Richard Lynn, Simon Mitchell, Colin Michie, Chikwe Ihekweazu.   

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 Data sources included BPSU databases, published and unpublished reports.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.

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Year:  2011        PMID: 21852323     DOI: 10.1093/pubmed/fdr058

Source DB:  PubMed          Journal:  J Public Health (Oxf)        ISSN: 1741-3842            Impact factor:   2.341


  4 in total

1.  How to measure the need for transition to adult services among young people with Attention Deficit Hyperactivity Disorder (ADHD): a comparison of surveillance versus case note review methods.

Authors:  Helen Eke; Astrid Janssens; Johnny Downs; Richard M Lynn; Cornelius Ani; Tamsin Ford
Journal:  BMC Med Res Methodol       Date:  2019-08-20       Impact factor: 4.615

2.  Incidence of anorexia nervosa in young people in the UK and Ireland: a national surveillance study.

Authors:  Hristina Petkova; Mima Simic; Dasha Nicholls; Tamsin Ford; A Matthew Prina; Ruth Stuart; Nuala Livingstone; Grace Kelly; Geraldine Macdonald; Ivan Eisler; Simon Gowers; Barbara M Barrett; Sarah Byford
Journal:  BMJ Open       Date:  2019-10-22       Impact factor: 2.692

3.  Intussusception incidence among infants in the UK and Republic of Ireland: a pre-rotavirus vaccine prospective surveillance study.

Authors:  Lamiya Samad; Mario Cortina-Borja; Haitham El Bashir; Alastair G Sutcliffe; Sean Marven; J Claire Cameron; Richard Lynn; Brent Taylor
Journal:  Vaccine       Date:  2013-07-17       Impact factor: 3.641

4.  Effectiveness of Implementation of Electronic Malaria Information System as the National Malaria Surveillance System in Thailand.

Authors:  Shaojin Ma; Saranath Lawpoolsri; Ngamphol Soonthornworasiri; Amnat Khamsiriwatchara; Kasemsak Jandee; Komchaluch Taweeseneepitch; Rungrawee Pawarana; Sukanya Jaiklaew; Boonchai Kijsanayotin; Jaranit Kaewkungwal
Journal:  JMIR Public Health Surveill       Date:  2016-05-06
  4 in total

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