National Reyes Syndrome Foundation UK

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About The National Reye's Syndrome Foundation UK

Notable Achievements

Informing the public and medical communities

There was a dramatic decline in classic aspirin - associated Reye's syndrome after warning labelling on aspirin was introduced in 1986, and subsequently revised in 2003.  This is largely due to the work of the Foundation's medical and scientific advisory board which has earned the sincere thanks of parents and the general public.  There have been no reported cases of classical Reye’s syndrome in the United Kingdom since April 2002.

In the 1980’s the Foundation produced leaflets "Your child and Reye's Syndrome – the facts the "dangers" and "After Reye's Syndrome” designed to educate and inform parents, the public and professional bodies.   The Foundation also produced a poster, which was circulated to all hospital paediatric departments throughout the country.

In the 1990’s the Foundation funded studies into the pathogenesis of Reye's syndrome and a pilot study into Medium-chain acyl-CoA dehydrogenase deficiency (MCADD - a Reye-like illness).  Additionally the Foundation undertook the funding of surveillance of classical Reye’s syndrome from 1998 to 2000 following a decision by the Public Health Laboratory Service to curtail funding.

In March 2002 the Foundation funded a Workshop at which invited experts considered various aspects of Reye’s syndrome and Reye-like illnesses.  The main recommendation which emerged from the discussion: that a proposal was needed to develop a formal evidence-based guideline on the diagnosis and management of disordered consciousness.

A project to undertake this was subsequently begun at Nottingham in November 2003 under the direction of Professor Stephenson and funded by the Foundation. In 2005 this resulted in the publication of an evidence-based guideline by the Paediatric Accident and Emergency Research Group in Nottingham - “Management of a Child (aged 0 to 18 years) with a Decreased Conscious Level”.  The guideline was disseminated to all members of the RCPCH.

The Foundation subsequently funded the RCPCH "Decreased Conscious Level multi-site audit" in 2010 and 2011, and the revised guideline published in February 2015.  This revised guideline is in use, in whole or in part, in many children's units.

Next review due 1st June 2016