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When I started giving solid food to my youngest son, he had immediate and scary allergic symptoms to egg, milk and peanut. Now at 3 years of age, his food allergies dominate everyday life. 

He can’t eat common foods, we have to constantly ensure we have food alternatives and carry medications everywhere we go. My heart breaks when I can’t give him the soft serve ice cream most other kids have. I feel able to keep him safe at home and when at nursery, however, I worry about the dangers he will face as he gets older, becomes more independent and eats away from home. 

This is why I feel incredibly passionate about working for the Centre for Applied Excellence in Skin and Allergy Research (CAESAR) and running the food allergy priority setting partnership. 

The Journey of a JLA PSP 

Food allergies affect up to one in five children in the UK. Despite the urgent need for better understanding, diagnosis and treatment, research priorities have often been set by funders and researchers rather than those directly impacted. 

This is why we’re delighted that the NIHR have funded us to work with the James Lind Alliance (JLA) to run a Priority Setting Partnership (PSP). The PSP process ensures that children and young people with food allergies, their parents, and health care professionals who care for them have a voice in shaping the research agenda. 

The goal of a JLA PSP is to create a list of the top 10 research questions that reflect the needs of those living with and looking after people with food allergies. 

Engaging the Right Voices 

One of the most critical aspects of the PSP process is engaging everyone with an interest in the problem. 

To ensure inclusivity, we set up a steering group to help us make key decisions on the project.  It is made up of those with direct experience of food allergy including young people, parents, healthcare professionals who work in paediatric allergy and representatives from eczema and allergy charities.  

The first stage involved setting up an online survey to capture the experiences and unanswered questions important to young people, their parents and healthcare professionals. We had 832 responses with over 2500 questions submitted. To provide an additional opportunity for children to contribute, we held an online workshop facilitated through Eczema Outreach Support where young people with eczema and food allergies discussed their experience of food allergy. They were particularly concerned about feeling left out and managing food in school and when eating out.  

With the help of our steering group, we have grouped the survey and workshop responses and formed 60 summary research questions. They cover topics such as the early life experiences that cause allergies, how to prevent food allergy, improving the accuracy and reliability of diagnosis, what are the most effective treatments and how food allergy impacts children and their families. 

Navigating Challenges and Looking Ahead 

Whilst we achieved great engagement to our first survey, it has been tricky to ensure input from a diverse range of people including children and young people, fathers of children with allergies and those from minority ethnic backgrounds. 

We aim to maintain the momentum and enthusiasm over the coming months when later this month we launch the second survey asking respondents to select their top research questions from the long list of 60. 

The top questions will then be taken to a final workshop where children and young people with food allergy, their parents and health professionals will select the final top 10 research priorities. 

The Impact of Setting Priorities 

At the end of the process, the final top 10 research priorities provide a powerful tool to guide future studies, funding decisions, and policy changes. 

By working collaboratively with children and young people with food allergy, their parents and healthcare professionals, I feel we will ensure that food allergy research moves in the right direction—one that truly meets the needs of patients and healthcare providers alike. 

by Dr Roxanne Parslow, a Research Fellow at the University of Bristol’s Centre for Academic Primary Care

By Rosie Vincent, Clinical Research fellow and Dermatology Resident, Centre for Applied Excellence in Skin and Allergy Research, University of Bristol

Why is this question important?

Eczema, otherwise known as atopic dermatitis, affects 1 in 5 children and 1 in 20 adults. Severity can vary, with many experiencing ‘flares’ when the eczema is worse, and times when it is better.

Most eczema (over 90%) is managed by GPs in the UK. The main treatment options are topical, most commonly moisturisers, topical corticosteroids, and topical calcineurin inhibitors. Topical steroids have ‘flare control’ properties and can be very effective, although it is reported that over a third of patients now have a fear of using topical steroids, and around half feel they would affect their future health.¹

Surprisingly, there is a lack of clear guidance on how topical steroids should be stopped or reduced once the eczema is better controlled. This can lead to different healthcare professionals giving different advice to people with eczema, which can result in confusion.

I am now 6 months into my PhD project, which is looking at this question, starting with a systematic review to see what evidence from previous studies is out there. For the next part of my PhD I plan to explore this area with both people living with eczema, and those treating it. Using data collected through questionnaires and interviews I aim to increase our understanding of what is currently being done and why.

Sisters’ Health Event

When designing this study my goal is for those with eczema, or impacted by eczema, to add their input and make sure it’s as relevant and important to them as possible. One of the places I have sought to capture their views is at the Sisters’ Health Event, held on the 8^th February 2025 at Greenbank Masjid.

This was a fantastic opportunity, organised by Samina Baig at Caafi health, a community interest company working in and around Bristol to help communities access their right to good health. I was amazed and inspired at how engaged people were with the subject, and how much they had heard online about topical steroids, even if they didn’t have a skin condition! At this event there were a huge variety of health care professionals including students, dentists, doctors, nurses, charities, physiotherapists, and dieticians who were offering advice, health checks and support.

 

Centre for Applied Excellence in Skin and Allergy Research (CAESAR)

Being based in the CAESAR team, I am lucky to work with such experienced and supportive colleagues. I have had opportunities to get involved with some of the other pieces of work in the group such as the priority setting partnership to develop the top research questions for food allergy and work regarding dietary data collection methodologies. Click here Centre for Applied Excellence in Skin and Allergy Research (CAESAR) to find more about the CAESAR team and their projects.

 

References

1. Christensen, Maria O. et al. Prevalence and clinical impact of topical corticosteroid phobia among patients with chronic hand eczema—Findings from the Danish Skin Cohort. Journal of the American Academy of Dermatology, Volume 91, Issue 6, 1094 – 1103

I had the privilege of organising and chairing the 13^th SAPC Skin SIG meeting on the 5^th February 2025, held at the British Association of Dermatologists, London. The SAPC Skin SIG was established in 2011 and aims to promote research for the prevention, diagnosis and management of skin problems commonly seen in primary care.   The Eczema Care Online (ECO), a website created to help people manage eczema funded by the NIHR, supported the day, meaning we could meet face-to-face.

There was an impressive turnout of 29 people, who had come from as far as Cork and the Isle of Wight. There was an excellent line up of presentations of current and upcoming skin related research covering a wide breadth of skin conditions (such as eczema, skin cancer, hidradenitis suppurativa, acne and lichen sclerosis) and research methods, including artificial intelligence. There was representation from multiple professions, including research nurses, researchers in statistics and applied health research, GPs, dermatologists and patient representatives/ citizen scientists. Presenting and getting feedback from this group was invaluable for the planning of my project and hopefully will lead to collaborations and projects in the future.

Rosie Vincent, March 2025

It’s just over a year since the new Centre for Applied Excellence for Skin & Allergy Research (CAESAR) was established.  As centre lead, this is a chance for me to reflect on what’s been achieved in the first 12 months and what 2025 brings. 

CEASAR is part of my NIHR Research Professorship, which is a 5 year award I started in December 2023.  Although it is a personal award, what has been really exciting about getting it is all the other people I have been able to start working with because of it. 

Over previous years, I’ve worked with lots of dedicated and clever people, who have helped make studies like BEE and TIGER possible.  This includes the small army of people at the Bristol Trials Centre, who make clinical trials possible.  Clinical trials are usually the best way of finding out whether something is really helpful or not, be that a skin cream, food allergy test or something else. 

But not all research needs or is ready for a trial.  And how do we know which are the most important research questions to answer anyway? 

That’s why I’m so pleased that the National Institute for Health and Care Research (NIHR) decided to fund me, CAESAR, and the Transforming Outcomes for Paediatric allergy In primary Care (TOPIC) programme.  There are 5 main elements to TOPIC: 

• Two are about childhood eczema – finding out the best way to use emollients and topical steroids together and whether an eczema clinic in your GP surgery would help to treat the condition better. 

• Another two are about childhood food allergy – deciding what the research priorities are and looking into awareness of current guidance about introducing food allergens into infants’ diets. 

• The final one cuts across all of these – keeping the patient and public voice at the heart of what we do and how we do it. 

All this is only possible with the work of the 3 Research Fellows, Project Manager and Research Administrator, who do all the heavy lifting to deliver these projects.  They are supported by other colleagues who also help supervise 3 PhD students who are doing related work on food allergy and the treatment of eczema.  Patient charities have also joined us to help make our research as useful as possible. 

With all of the research team in place, CAESAR is now fully-sized, and we have our work cut out in the forthcoming year to seize the opportunities that have come with it.  We will continue to write blogs to keep you updated as each bit of research progresses but please get in touch if you would like to get involved or would like to receive our regular newsletter. 

Matthew Ridd, January 2025. 

The first survey of the PSP is now closed. We are analysing the responses and the second prioritizing survey is due to launch in April 2025.

1 in 5 children in the UK suffer from eczema. But what is the lived experience of eczema from a patient and parent perspective, and what are the challenges they face on a daily basis?  

My name is Dr. Eliza Hutchison and I am a resident Dermatologist and Academic Clinical Fellow and spend my academic time with Professor Matthew Ridd and the rest of the Centre for Applied Skin & Allergy Research (CAESAR) team. I attended an event organised by Eczema Outreach Support (EOS), a charity founded in 2011 that provides practical and emotional support for children and young people with eczema and their families. I went as part of the CAESAR team to raise awareness of our research, in particular the BEE (Best Emollients for Eczema) and TIGER (Trial of food allergy [IgE] tests for Eczema Relief) studies.  

The afternoon consisted of both child and parent-focussed activities. Whilst the children engaged in a relaxation session and various games, parents had the opportunity to attend a peer support session and a doctor-led question and answer session.  

It was a wonderful afternoon and provided valuable insight into eczema experiences from a patient and carer perspective. Families had travelled from across the UK to attend. Children were mostly accompanied by their mothers, but some fathers and grandparents also attended. Most children at the event had moderate to severe eczema.  

We joined a peer support session in which parents shared their experiences and challenges of having a child/young person with eczema. Conversation was focussed on delays and frustration around access to secondary care Dermatology services. Many parents felt that advice and treatments provided in primary care were unsatisfactory, and often described having to ‘fight’ to get help.  

There were many concerns around topical steroid safety and withdrawal and queries regarding how to wean steroids, as well as a desire to use more natural skin products. Many parents seemed to use a trial-and-error approach to treatments and purchased a lot themselves rather than via a prescription.  

Food allergies in eczema was another frequently raised topic. Many parents were concerned that food allergies were driving their child’s eczema and had tried omitting certain foods themselves but felt dismissed by their healthcare professional when they requested an allergy test. It was clear that eczema causes a significant emotional burden on both the child and their family, and in many instances it also created tension in parental relationships.  

I was surprised that research was not mentioned, both in terms of getting involved and the possibility that it may provide a solution to the common challenges faced by individuals. When we spoke to families about CAESAR and our work, many were not aware that they could get involved in research. We had a lot of interest in our current TIGER study on eczema and food allergy testing, which is currently recruiting. 

From a clinician’s point of view, it was particularly interesting to hear about eczema from a parental perspective and the impact it can have on the whole family. In clinic we often just get a snapshot of a child’s eczema experience and sometimes don’t appreciate the significant impact it can have on the rest of the family, such as on sleep, education, work and relationships. Furthermore, hearing about the significant concerns many parents have around topical steroid safety and the influence of food allergies was particularly interesting as sometimes as clinicians we can inadvertently dismiss these concerns without properly acknowledging them. Clearly further research is needed in these areas to better-understand their role in eczema.  

My takeaway points were: 

• Eczema can be a significant burden on the whole family, not just the eczema-sufferer; 

• Topical steroid safety and food allergies in eczema-sufferers are common concerns and parents/carers often feel dismissed when they raise these concerns to healthcare professionals;  

• Many parents/carers are not aware of current eczema research nor the possibility of getting involved, so we need to work closely with the patient community to broadcast research developments and opportunities.  

It was an eye-opening, informative afternoon and we enjoyed representing the CAESAR team. We look forward to attending similar events in the future.  

Do you have a food allergy or care for someone with food allergy? Do you have a question you would like answered by research? Tell us to help set the TOP 10 research priorities for food allergy in children!

Our first survey is now open – click here to take part and shape future research!

 

As Allergy Awareness Week comes to an end, we are very excited to share the announcement that came out yesterday introducing the Centre for Applied Excellence in Skin and Allergy Research. Read more about it here.