People with eczema have chance to vote on future research topics

People with eczema are being given the chance to suggest and vote on future research ideas for the skin condition.

Researchers from the University of Nottingham, together with doctors and patient partners from Nottingham University Hospitals NHS Trust, have been awarded £2.5 million by the National Institute for Health & Care Research (NIHR) to develop a programme of research studies, suggested and developed by adults and children living with eczema.

The Rapid Eczema Trials research project will ask people with eczema to choose what research questions about eczema are most important to them. They will act as “citizen scientists”, working together to prioritise and design a series of online research studies. People will be encouraged to take part from across the UK. The research team is hoping to involve 1,000s of people over the five-year lifetime of the project and are particularly keen for people to get involved who might think that research is not for them.

The expertise of some of the UK’s leading eczema researchers and healthcare professionals will be drawn upon to support citizen scientists to run multiple ground-breaking clinical trials that will generate a wealth of evidence, leading to practical advice and actions to help people with eczema better self-manage their symptoms.

The project is being co-led by Kim Thomas, Professor of Applied Dermatology Research at the University of Nottingham and Co-Director of Centre of Evidence Based Dermatology

This is an exciting and welcome development in eczema research. I hope that by sharing the knowledge and understanding that we have built up over the last 20 years will now enable people with eczema to drive their own research agenda and to answer questions that are important to them.

Amanda Roberts is also co-leading the project. She is a long-term champion of patient involvement in research and will make sure the research includes a diverse group of people. Amanda described the project as long-awaited and “wonderfully exciting.”

This ground-breaking programme of research is something I have dreamed of doing for many years. It is very exciting to give patients the opportunity to decide which research questions need answering and then take advice from brilliant dermatology researchers on how trials to answer these questions should be conducted.

Amanda, who has eczema herself as do her two sons, helps to run the Nottingham Support Group for Carers of Children with Eczema. She explains: “Around one in five children and one in 10 adults lives with eczema, and this programme is intended to come up with insights to make their lives easier.”

The project will include several randomised controlled trials (trials that compare one treatment option with another) that people with eczema can sign up for and participate in online. The team wants to include people with different backgrounds and experiences so that that the research meets the needs of all patients. UK eczema charities (National Eczema Society and Eczema Outreach Support) are also involved in supporting the programme.

The Rapid Eczema trials research project is led by researchers at the University of Nottingham and Nottingham University Hospitals NHS Trust, and is being delivered in collaboration with another four UK Universities (Southampton, Bristol, Birmingham City, Imperial) and the Nottingham Clinical Trials Unit.

The project has been funded by the National Institute for Health and Care Research (NIHR), the research partner of the NHS, public health and social care, which is funded by the Department of Health and Social Care.

While the eczema science community will decide which issues are the highest priority for patients, the project is starting by exploring questions that people have about the best ways of bathing when you have eczema. People can vote for their favourite questions and sign-up to join a working group through the Rapid Eczema Trials website: www.RapidEczemaTrials.org

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