The new Anaphylaxis Registry

Data, data, data…. Data, we are told, is king. Without data you cannot understand what has happened in any given circumstance, you cannot improve your response to it and you cannot plan to prevent it happening again. But as far as anaphylactic reactions are concerned, data has, until now, been all but non existent.

Why we need data

The vast majority of anaphylactic incidents occur as a result of an accidental exposure to an allergen – and the vast majority of food reactions happen outside the home in some sort of eaterie.

When such an incident occurs, there are always a number of ‘players’ whose knowledge and recollections of the incident are crucial to understanding what happened and to guarding against it happening again:

• the allergic person suffering the reaction
• any friend or bystander who witnessed it
• the eaterie (if it is a food reaction) providing the food
• any emergency teams that are called out
• the A&E department at which the person is treated
• the person’s GP
• their allergy consultant if they have one
• if it is a food reaction, the local authority under whose jurisdication that eaterie comes
• if it is a food reaction and should the case go to court, the legal team and judge or coroner that hears the case.

Even if the reaction is relatively mild there will still be three players (the person suffering the reaction, any bystanders, and (if food) the eaterie who supplied the food). And it is important to log, collate and share their experiences in order to avoid a future similar incident. This is especially important as allergic reactions can all too often escalate from mild to more serious  so understanding what happened on a previous occasion is really important.

But, up till now, there has been little logging and a great deal less sharing of  this information. Which is why the the Food Standards Agency’s (FSA) new Anaphylaxis Registry is such a great step forward.

The Anaphylaxis Registry

Collecting data from health professionals

The registry will be a data set held by the FSA in conjunction with the BSACI (British Society for Allergy and Clinical Immunology) into which A&E clinicians, allergy nurses and allergist/immunologists who deal with patients at outpatient clinics can input data. They would input data about the reaction but more importantly, about the triggers and the circumstances that led to the reaction. This will allow health professionals and the FSA to build a picture of anaphylaxis reactions occurring in the community thus enabling better long term management of the condition.

Collecting data from patients

Even better, the register is also able to take information from the anaphylaxis patients themselves. When a healthcare professional logs information on a reaction, assuming that the patient agrees, they will also log the patient’s email address so that they can be sent a questionnaire about symptoms and possible risk factors. (All data will be anonymised and de-identified.) This information is invaluable. Allergy is such an individual condition that understanding the many different ways that it can present in different patients will be hugely helpful for those trying to keep them safe.

If a patient has had a reaction that they have dealt with themselves and that has not involved a healthcare professional they can still ask their doctor or allergist to register the event so that they are able to input information on the reaction themselves.

More data, more data

All of this is great and very much to be welcomed but, as you may have noticed, in the case of food reactions, it does leave out one key player: the local authorities (Trading Standards and Environmental Health officers) who have responsibility for monitoring the eateries where reactions may have occurred.

Another FSA project, FARRM, that I mentioned in a post a few months ago, was looking to provide a means by which those who had suffered allergic reactions in specific eateries, could report them directly to the local authority. Thanks to COVID, that project has had to be reviewed as the local authorities are already overwhelmed.  However, the FSA’s  preliminary research among allergic consumers also suggested that ‘many consumers were put off from reporting a reaction if enforcement action was to be taken. People said they would prefer to speak directly with the food business and make them aware of the problem. If they felt that their concerns were not being taken seriously, however, they would be motivated to pursue enforcement action’.

FARRM is therefore now going down a different route.  This would allow food sensitive consumers to report directly in to an FSA database – which would be, presumably, be linked to the Registry database.  Their reports would cover both reactions that they had managed themselves and had not required hospitalisation (and therefore would not have got logged under the Registry scheme) – and ‘near misses’.

Near misses

As of now there is virtually no information on ‘near misses’ – where unclear, poor or non existent messaging could have resulted in an allergic reaction if the allergic consumer had not been particularly vigilant. In term of devising interventions which could help to better manage messaging, this would be extremely useful information.

Please get involved

The establishment of this registry and the work on the FARRM project are really important in terms of taking the management of anaphylaxis forward.  Not only because prevention is always so much better than cure but because in anaphylaxis the margin between safety and disaster is so narrow that anything  that can be done to prevent a reaction is hugely to be welcomed.

So please do tell your GP, allergist and anyone else that you know who also has an allergy about the registry and how they can contribute to it. If data is king then the more of it we can accumulate and the quicker that we can so do the sooner we will be able to make a serious change.

Health professionals should log in to this page to register.

And just to warn you that you will be asked agree to particpate (click ‘submit’ and then agree) before you actually get to register your details.

Health professionals can also register as a contributor by contacting anaphylaxis.registry@imperial.ac.uk.

And congratulations to Dr Paul Turner, the BSACI and the FSA who have managed, in conjunction with the NORA European Anaphylaxis Registry, to pull this excellent initiative together.