The UK Fatal Anaphylaxis Registry (UKFAR), has been developed to collect information pertaining to fatal anaphylactic reactions with the aim of analysing the data and sharing the findings in order to influence clinical outcomes.
UK FAR seeks to assemble details of every fatality in the UK since 1992 for which anaphylaxis is considered a possible cause of death. Near-fatal reactions with subsequent death due to brain damage or other resuscitation sequelae are included. The registry, founded by Richard Pumphrey in the early 1990s, aims to collect detailed information about every case, typically 20-40 each year. The data in the registry has improved our understanding of fatal anaphylaxis and the clinical circumstances leading to fatalities.
This important work is funded by the Food Standards Agency (FSA) and enables analysis of fatal anaphylaxis cases. The data from the registry informs trends and helps develop better understanding of the risks and causes of fatal anaphylaxis, which will ultimately provide knowledge to reduce the risk of future deaths.
“Our existing understanding of why some allergic reactions are catastrophic leading to death, when many respond to treatment, is lacking. Fortunately, fatal anaphylactic reactions are rare, however each of these unfortunate events must undergo detailed scrutiny to help improve our understanding and improve clinical outcomes so we are able to avoid unnecessary deaths in the future”.
Dr Vibha Sharma, Consultant in Paediatric Allergy at the Royal Manchester Children’s Hospital and custodian of the registry
Continuing to collect this data in the UK is important to allow comparison with data in other countries, add to the overall understanding on fatal anaphylaxis. Enhanced understanding will enable us to improve the advice on avoidance strategies and management of anaphylaxis to reduce fatalities. This approach is particularly important considering the reported increase in prevalence of allergy in the UK population.
We are looking for BSACI members to support UKFAR
We wish to look at any information that can be shared with us on fatal cases of anaphylaxis which people are directly involved with as this would be incredibly helpful. Additionally, for any on-going evaluations, people can request involvement of the registry team directly with the Coroner. Direct involvement of the registry team with the Coroner, investigation of cases gives the richest possible information.
UKFAR members include: Dr Vibha Sharma, Consultant in Paediatric Allergy at the Royal Manchester Children’s Hospital, (Custodian of UKFAR) Dr Tomaz Garcez, Consultant Immunologist and Dr Andrew Parkes, Consultant Anaesthetist at the Manchester University NHS Foundation Trust can be contacted to support case investigation.
“Working with MFT on this UK Fatal Anaphylaxis Registry is hugely important and the BSACI are grateful to the Foods Standards Agency for supporting the UKFAR. This would ensure sustainability and aid engagement with the coronial system, which is one of the key agencies UKFAR relies on to provide details of all cases of suspected fatal anaphylaxis. This funding is a one-off grant, however long-term funding is needed to support the registry thereafter. There has been a lot of media coverage of fatal anaphylaxis recently which has brought to the fore the critical work of UKFAR.”
Professor Adam Fox, Past President of the BSACI