Focus on BSACI registries

Each BSACI registry is used to evaluate and improve outcomes for patients. deaths in the UK. Gathering information from each of these cases is crucial.

Registry for Immunotherapy (BRIT) is a web-based patient registry that records immunotherapy treatment of patients under the care of BSACI consultants practicing in the UK. To find out more visit www. bsaci.org/professionalresources/bsaci-registries/ immunotherapy-registry/ BSACI is working with Imperial College to support the UK Anaphylaxis Registry which has been set up to collect data relating to unintended allergic reactions. The Registry is fully integrated into the existing European Anaphylaxis Registry Network for Online Registration of Anaphylaxis (NORA). To find out more visit www.bsaci.org/ professional-resources/bsaci-registries/ukanaphylaxis-registry/ UK Fatal Anaphylaxis Registry (UKFAR) analyses suspected cases of fatal anaphylaxis from any cause. Each year there are between 20-50 such

UKFAR data aims to helps develop better understanding of the risks and causes of fatal anaphylaxis with the intention of reducing the risk of future deaths from anaphylactic reactions. UKFAR has received a grant from the Food Standards Agency (FSA) to continue its important work. UKFAR encourages the submission of suspected cases on mft.fatal.anaphylaxis@nhs.net. Team can provide advice on the investigation of cases. Early involvement of UKFAR in the assessment of suspected fatal anaphylactic events is beneficial in the identification of contributing factors and to guide or focus post-mortem assessment. For further information please visit www.bsaci.org/professional-resources/ukfar To find out more about BSACI Registries and how to sign up to help us with our evaluations visit www.bsaci.org/professional-resources/bsaciregistries/

UK Fatal Anaphylaxis Registry

UKFAR analyses suspected cases of fatal anaphylaxis from any cause

UK FAR seeks to assemble details of every fatality in the UK since 1992 for which anaphylaxis is considered a possible cause of death. Nearfatal 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.

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. To register a case visit www.bsaci.org/ professional-resources/bsaci-registries/ukfar/ uk-far-contact-us/

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.

Exciting changes to the BRIT Registry

Improving our patient experience and the dawn of recording peanut immunotherapy

Dr Mich Lajeunesse

Consultant in Paediatric Allergy & Immunology Southampton Children’s Hospital

We saw in the New Year by welcoming our new administrator, Maria Smith. She is working with us three days a week and has taken over new registrations. She can help you get set up in the registry and troubleshoot any problems you might have. Our poster at the WAO & BSACI conference showed that about 50% of BSACI services are now registered with BRIT. We would like to make it as simple as possible for you to get started, and we’ve made some developments that will really help. Firstly, we combined our consent forms into a single document to make the consent process simpler and more intuitive. There is just one consent form, regardless of what form of immunotherapy you administer. We have one for children under 16 and one for adults.

We have made changes to our patient related outcome measures because of poor return rate. Patients can now receive a text message instead of an email. We’ve realised that a lot of the registry emails go into junk folders or get overlooked. Because you will need patients’ consent to collect their phone numbers, we have created a onepage text message consent form so that you don’t have to completely reconsent existing patients. We’re also moving toward having monthly PROM questionnaires that focus on adherence, side effects, and realworld effectiveness. A few simple questions that will take two minutes to complete.

Peanut immunotherapy was licensed by NICE in February and the registry is now able to include your peanut immunotherapy patients. It is designed for children on Palforzia, but you can add any patients Maria Smith receiving peanut OIT as long as they are not currently part of a clinical trial. This includes children receiving dietary peanut as treatment for peanut allergy. As with the other parts of the registry, we are tracking adherence, safety, and effectiveness by looking at reactions to peanut and anaphylaxis whilst on treatment. If you are interested in learning more, visit the www.bsaci.org/professional-resources/ bsaci-registries/immunotherapy-registry/ to watch the recorded BRIT webinar from March, download our new forms, or contact Maria for advice at BRIT@BSACI.org.

We have redesigned our landing and registration pages (see below) to be clearer and more accessible. Visit BRIT to view the changes and register now.

Sign up to the UK Anaphylaxis Registry and help evaluate and improve outcomes for patients

Paul Turner

Reader in paediatric allergy and immunology, Imperial College London

better picture of the type of reactions - food and non-food related - that take place as well as their frequency and geographic spread. Understanding more about accidental allergic reactions to food, such as the specific food causing a reaction, will help us better protect those with food allergies.

The Registry works with a two-step data collection process. The first is a case report form for completion by the health care professional where anonymous data relating to the allergic reaction is collected. The second step is a patient questionnaire which will collect additional information relating to symptoms and possible risk factors in an anonymous way from the patient after verbal consent is obtained by the healthcare professional and consequent electronic informed consent then obtained.

BSACI is working with Imperial College London to establish a prospective UK Anaphylaxis Registry, supported by UK Food Standards Agency (FSA) and Food Standards Scotland (FSS), to collect data relating to unintended allergic reactions. The Registry is fully integrated into the existing European Anaphylaxis Registry Network for Online Registration of Anaphylaxis (NORA).

The UK Anaphylaxis Registry serves as a platform for clinicians to record details of all anaphylaxis incidents and will enable us to collate data from across the UK to help provide a

The UK Anaphylaxis Registry serves as a platform for clinicians to record details of all anaphylaxis incidents.

Since the registry launched in October 2021, 37 individuals have signed up to the registry, but we need many more contributors to help us understand more about accidental allergic reactions to food, such as the specific food causing a reaction, to help us better protect those with food allergies. We are encouraging BSACI members and other health care professionals to register for access to the online platform, and then submit data relating to unintended allergic reactions occurring in adults and children, to both food and non-food triggers. • To register as a contributor, visit bit.ly/uk-anaphylaxis • If you are already registered and want to report a case, visit www.anaphylaxie.net/ survey/admin/authentication/sa/login • Free short tutorial video explaining how to use the platform and the Case

Report Survey can be found at https://www.anaphylaxie.net/en/ educational-video/ Once your account has been approved, you will receive an email with your User ID and password which will give you access to the online platform. If you have any questions, please email Dr Alessia Baseggio Conrado at anaphylaxis.registry@ imperial.ac.uk

Become a UK Anaphylaxis Registry champion

The UK Anaphylaxis Registry and BSACI are looking for healthcare professionals across a range of settings including hospitals, primary care, general practice, and emergency department who will act as champions and promote participation of their colleagues and report allergic events in the UK Anaphylaxis Registry. The champion should be a consultant or specialist nurse (band 7 upwards). The registry also has the functionality to set up a centre-based account for the champion. This shared account aims to give the champion the opportunity to share their account details with their colleagues to facilitate the reporting of allergic events into the NORA platform. To activate the centre-based account you must select this option in the e-request (https://bit.ly/ukanaphylaxis). Centre User ID and a password will then be created. Sharing these account details will be at the champion’s discretion.