The Rapid Eczema Trials project is set up to help put people with eczema in the driving seat. People with eczema and carers often have questions about looking after eczema (such as how often to wash, what to eat, and how to use their creams), but there is often limited research to help guide these types of decisions.
The Rapid Eczema Trials project is inviting people with eczema and caregivers to join this eczema research community. This community allows individuals to help design and participate in research. This research is supported by experienced researchers to ensure that high-quality standards are met.
This five-year project will answer multiple questions that the people participating in the project consider important. The project team is looking for new members to join the Eczema Research Community. If you or someone you care for has eczema, the project team would love to hear from you. We are also looking for people who would like to take part in studies. Find out how to sign up to the community and participate in studies at www.RapidEczemaTrials.org
This article was first published in the Spring/Summer 2024 edition of National Eczema Society’s membership magazine, Exchange.
Answering the Eczema Questions that Matter to You
Researcher Dr Emma Campbell introduces an innovative research project that is designed with people with eczema, for people with eczema.
How often do you turn to Google or eczema support groups to find ways to stop eczema
itching, to see if stress might have caused a flare-up, or to search for products that might
help someone with eczema get a better night’s sleep? These are just some of the questions that matter to people living with eczema. But despite people’s need for information, many of these questions have still not been fully answered by research studies. We are working to change this through our project Rapid Eczema Trials.
Our project is using high-quality studies to answer questions that impact everyday life
for people living with eczema, such as ‘How often should I bathe?’ and ‘Will meditation
help my eczema?’ Amanda Roberts and Kim Thomas are co-leads of the five-year research programme.
Amanda has been a key patient voice in many research projects. She has eczema herself. As do her children. Kim is a world-leading eczema researcher. She also has eczema. Together, they have many years of lived experience of eczema and of dermatology research. Amanda and Kim were becoming increasingly fed up with the lack of answers from research to questions that are important to people with eczema. So they decided to do something about it. The result was a proposal for a project.
Rapid Eczema Trials – will enable some of these questions to be asked in high quality
clinical studies. The voice of people with eczema is key to the questions the project is seeking to answer. Because of this, Amanda and Kim designed Rapid Eczema Trials as a citizen science project. This means involving people with eczema, and parents of children with eczema, every step of the way.
‘Being involved with Rapid provides a real opportunity for people without a scientific background to make a meaningful contribution to research,’ says citizen scientist Tressa. She adds: ‘Rapid has helped
me to take back control.’
Fellow citizen scientist Hugh describes how the project has ‘made me think about how I treat my eczema, which I’d just given up on.’
How Does Citizen Science Work?
In our Rapid Eczema Trials community, people with eczema and parents of children with eczema decide what topics are most important to them. They decide what questions should be answered through research. Smaller groups of these citizen scientists then work together with healthcare professionals and researchers, through online meetings, to design the research study. Once a study has been approved, people living with eczema in the UK can take part in the research.
‘None of the citizen scientists are experts in research,’ explains citizen scientist Kelly.
‘We are ordinary people living with eczema all over the country. The only reason we got
together and worked on the panel is the determination we must fight eczema.’
As well as being led by citizen scientists, another ground-breaking aspect of Rapid Eczema Trials is that the studies themselves are run entirely online. People taking part monitor their own eczema and fill in online questionnaires to record any changes they notice during the study. This means there are no geographical boundaries to taking part and no need for participants to make their way to extra GP or hospital appointments for assessments. These really are studies people can do from the comfort of their own home.
‘It feels good to be able to try and do something positive for people with eczema and be listened to.’
Rapid Eczema Trials citizen scientist Aaron.
The Rapid Eczema Trials project started in September 2022, and three topics have been
prioritised:
- Best ways to bathe when you have eczema
- Best ways to keep control of eczema between flare-ups
- Psychological interventions for people with eczema.
The first study undertaken addressed the question: ‘Is it better to bathe daily or weekly when you have eczema?’ This study is now closed and recruited 440 people with all severities of eczema, and of all ages. Once the results are analysed, our citizen scientists will help us work out the best way to share our findings with the wider eczema community, including members of the public and healthcare professionals.
If you’d like to get involved in any way, we’d be delighted to welcome you to our community.
Anyone in the UK who has eczema, or who cares for someone with eczema, can join the
Rapid Eczema Trials community. This is your chance to help research for the benefit of
everyone living with eczema.
Rapid Eczema Trials citizen scientist Mars explains: ‘[It’s] very good to see those doing research really care about what will be useful
How to Join
Sign up for the newsletter at https://RapidEczemaTrials.org to hear about project updates and opportunities on how to get involved. You’ll also have the chance to vote on topics and feed into future surveys.