People say that there is strength in numbers, and for people with rare diseases it’s important to work together to learn how best to treat and achieve better outcomes. No more so than in our current NHS where there is such demand on healthcare.
Specialist allergy clinics around the UK treat adults and children with allergen immunotherapy. These are injections, drops or tablets to be taken under the tongue that gradually desensitise the immune system in people with serious life-affecting allergies. Examples include the use of venom injections against anaphylaxis to bee and wasp stings, and the use of grass pollen for people with very severe hay fever.
Unlike Europe, where allergen immunotherapy is commonplace, these treatments are rare in the UK, and most specialist clinics will still only have a handful of patients on their books at any one time.
It’s for this reason that the British Society for Allergy and Clinical Immunology (BSACI) established a registry for adults and children receiving immunotherapy in the UK. The BSACI Registry for Immunotherapy, or BRIT, started in 2019 and is just entering its second three-year phase. BRIT aims to show how these desensitisation treatments work in clinics, rather than the research lab, and will provide useful data on the long-term benefits of these immune-modulating treatments.
The registry will also show how access to immunotherapy around the UK is patchy at best and that many people have to travel long distances to access care. We will be able to use this data to inform the development of treatment networks around the UK.
Working together to improve patient care is more important now than ever. Allergy medicine is a rapidly-developing field and new treatments are becoming available all the time. For instance, the first treatment for peanut allergy has been approved in the last 12 months. The BRIT registry has been adapted to include peanut immunotherapy in clinical practise as part of its remit so we can map its use and outcomes in our clinics.
My hope, as the founder of this registry, is that in time it will include data on the majority of people receiving these treatments in the UK, so that we can use the registry to help improve services. Only patients who have provided informed consent can be included on the registry, so if your healthcare team hasn’t given you information about BRIT then you won’t be included.
The registry is designed to help everybody who’s involved in it. It helps patients and their families by recording their response to treatment through regular email questionnaire contact. It helps the specialist healthcare teams, because all immunotherapy information is in one place, so they can review their service very easily and look at their outcomes compared to national trends. It helps allergy services as a whole, by showing where these specialist treatments are available and how the treatments change lives for the better on a national scale.
We have big hopes for this registry, that it will really change the face of allergen immunotherapy in the UK. We want it to give the patients who require these specialist treatments easy access to them through specialist services that are in the right place and of the right size to deliver appropriate care. If you are receiving specialist immunotherapy treatment and have not been asked to participate in the BRIT registry, please contact your healthcare provider and ask them why they are not part of this initiative. It’s in everybody’s interests to work together for better outcomes for allergic disease.
If you are a provider, you can register now, using this link.