Dr Paul Turner, Consultant in Paediatric Allergy and Immunology at Imperial College London, and Ayah Wafi, Allergen Risk Assessor at the Food Standards Agency, introduce a new national reporting platform for allergic reactions. Funded by the Food Standards Agency (FSA) with contributions from Food Standards Scotland (FSS), the UK Anaphylaxis Registry will provide more data on levels of anaphylactic reactions in the UK.
Today sees the launch of the UK Anaphylaxis Registry at the Annual Conference of the British Society for Allergy and Clinical Immunology (BSACI).
The establishment of a registry represents an important step in better understanding anaphylaxis and how allergic reactions impact individuals in the UK.
An anaphylaxis reaction is a serious, and potentially life-threatening allergic reaction. Whilst severe or fatal anaphylaxis is rare, food-allergic reactions due to accidental exposure are common in people with a food allergy.
Until the launch of the registry, we have not had a standardised way of reporting these reactions in the UK. The registry will serve as a platform for clinicians to record details of anaphylaxis incidents, and collate data from across the UK to provide a better picture of the type of reactions, their frequency and their geographic spread.
Understanding more about accidental allergic reactions to food, such as the specific food causing a reaction, will help the FSA better protect those with food allergies.
The registry is being co-ordinated by researchers at Imperial College London, in conjunction with the NORA European Anaphylaxis Registry (Network of Online Reporting for Anaphylaxis).
Collecting anaphylaxis data
The UK Anaphylaxis Registry came about from a need to better understand the circumstances of accidental reactions happening in the community in connection with food.
Unfortunately, NHS data is limited by incomplete data or incorrect coding. This includes a lack of information as to which food allergen has triggered a particular reaction.
This significantly limits our understanding of the circumstances of allergic reactions, and our ability to use this information to improve patient care and to help guide public policy.
Collaboration between international allergy researchers
With funding from the FSA and FSS, researchers at Imperial College London have worked with the team of Professor Margitta Worm, who established and has led the European Anaphylaxis Registry (NORA) platform for over a decade.
During this time, the NORA Registry has collected over 15,000 anaphylaxis reports, spanning over 120 medical centres from 14 countries. This work has helped to identify factors which may contribute to more severe reactions and has guided decision making around anaphylaxis management.
By working with NORA, we will collect data relating to adults and children having unintended allergic reactions to both food and non-food triggers. This would be either at the time of presentation to an Accident and Emergency department, or within 12 months when the patient attends an outpatient appointment.
The project is supported by BSACI and Paediatric Emergency Research in the United Kingdom & Ireland (PERUKI), who will help recruit healthcare professionals to participate.
How to contribute to the UK Anaphylaxis Registry
Uniquely, we will also collect data about the circumstances of the reaction from the patient themselves. This includes their assessment of the severity of symptoms experienced.
When a healthcare professional logs a reaction, by entering (with permission) an email address for the patient, the system will email the patient a questionnaire collecting additional information relating to symptoms and possible risk factors.
All data will be anonymised and de-identified, in line with data protection legislation, protecting the identity of the patient themselves.
We are encouraging BSACI members and other healthcare professionals with an interest in allergy and anaphylaxis to register as a Contributor to the Registry.
You can do this by contacting firstname.lastname@example.org or visiting www.anaphylaxie.net.
Equally, if you have experienced an allergic event in the last 12 months, you can ask your healthcare professional to report it to the registry by contacting email@example.com for further information.
Dr Paul Turner is a Reader in Paediatric Allergy & Clinical Immunology at the Imperial’s National Heart and Lung Institute.
Ayah Wafi is an Allergen Risk Assessor at the Food Standards Agency.
Image credit: Shuttertock ID 52597095
This post was originally produced for the Food Standards Agency blog