National Reyes Syndrome Foundation UK

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About The National Reye's Syndrome Foundation UK

Surveillance

Epidemiological surveillance has been defined by the World Health Organisation as the collection, analysis and dissemination of high quality data relevant to the understanding, prevention and control of medical conditions of public health importance so as to satisfy the needs of health care professionals, science, government, voluntary organisations and the public at large.

Surveillance of Reye's syndrome began in August 1981 as a venture shared between the (then) British Paediatric Association and the Public Health Laboratory Service Communicable Disease Surveillance (CDSC).  Responsibility for case ascertainment was transferred to the British Paediatric Surveillance Unit (BPSU) in June 1986.  The administration of the scheme was transferred from CDSC to the Department of Paediatrics at Sheffield in 1995.  It ceased in 2001.  Since then the only routinely available source of information is the adverse drug reaction reporting scheme of the Medicines and Healthcare Regulatory Agency.

In 1984/85 a risk factor study mounted on the surveillance database, showed an association between Reye's syndrome and the consumption of aspirin.  Since 1986 there has been a requirement that products containing aspirin must carry warning labels which was extended to patient information leaflets from April 1998.   The incidence of "classic" Reye's syndrome dropped dramatically with the introduction of these warnings.  The last reported case of "classic" Reye's syndrome occurred in the UK in April 2002.

All of the fifteen reports of the BPSU covering the years 1986/1987 to 2000/2001 are reproduced as an Appendix, in each of the Trustees' reports for those years.  (These reports can be found in the sub-section headed "Reports")

It is now recognised that a number of inherited metabolic disorders – most notably those affecting fat oxidation, amino acid metabolism and ureagenesis may present as a "Reye-like" illness, which is clinically and pathologically almost indistinguishable from Reye's syndrome, although there are some differences including the age distribution.  (Further information can be found in the section headed "Metabolic Disorders")

On 13th March 1985 following the issue of a Press Statement by the Foundation, the disease Reye's syndrome was the subject of a Parliamentary written answer.  In July 1986 the problem the UK had been experiencing with the disease was the subject of a lengthy debate in the House of Commons.  The written answer and the extract from Hansard are reproduced as an Appendix in the Trustees' reports for 1985 and 1986 respectively.