Welcome to the homepage of the Eczema Priority Setting Partnership

Eczema UK is launching a national project to find out which eczema research questions matter most to people living with eczema, their families, carers, and healthcare professionals. We're calling it the Eczema Priority Setting Partnership, or Eczema PSP for short.

The project is run in partnership with the James Lind Alliance, an independent organisation that has spent over 20 years making sure that patients and carers have an equal say in shaping research, alongside the healthcare professionals and scientists who treat them.

At the end of the process, we'll produce a Top 10 list of the most important unanswered questions in eczema research. That list goes directly to researchers and funders, helping to point money and effort towards what actually matters to the people living with the condition.

The last time an eczema PSP was carried out was 2012, the project highlighted and spurred on new research in areas such as bathing, emollient application and topical steroids. A lot has changed since then, including new and exciting treatments, different challenges, and new questions that the community is asking. So it's time for a refresh, and we want to hear from as many people as possible.

Your experience of living with eczema, caring for someone who has it, or treating patients is exactly what this project needs. The questions you submit could end up shaping and guiding eczema research for years to come.

Take part in the survey here

Eczema affects millions of people across the UK. While research has led to important advances in treatment and care, many questions remain unanswered.

Since the first eczema Priority Setting Partnership was completed in 2011–2012, there have been major changes in eczema research, including:

• New medicines and treatments

• Greater understanding of the causes of eczema

• Increased awareness of mental health and quality of life impacts

• Growing recognition of health inequalities and the need for inclusive research

• New opportunities through technology and digital healthcare

We want to make sure future research focuses on the questions that matter most to the people affected by eczema today.

We want to hear from:

• People living with eczema of any age

• Parents, carers, and family members

• Healthcare professionals involved in eczema care

• Researchers

• Anyone with experience of living with or caring for someone with eczema

We are particularly keen to hear from people whose voices are often under-represented in research.

To take part at this current stage, please complete our survey.

You will be asked what areas you want to see prioritised for future eczema research. Your answers will be used by the PSP to create a list of the 10 most common themes or topics, which will then generate new cutting-edge research in these areas.

The survey will take approximately 10 mins to complete, and is a chance to directly shape future research and make your voice heard. Thank you.

Participants can submit questions about any aspect of eczema, including:

• Prevention and causes

• Diagnosis

• Treatments and management

• Mental health and wellbeing

• Living with eczema day-to-day

• Access to healthcare services

• Eczema in different skin tones

• Support for families and carers

If there is something you feel researchers should be investigating, we want to hear about it.

The project will take place over several stages:

Stage 1: Gathering questions

We will ask people affected by eczema and healthcare professionals to tell us what questions they would like research to answer. We are currently at this stage.

Stage 2: Reviewing the evidence

An independent Information Specialist will review the questions and check whether they have already been answered by existing research.

Stage 3: Prioritising the questions

People with lived experience and healthcare professionals will help rank the remaining unanswered questions.

Stage 4: Final workshop

Patients, carers, and clinicians will come together to agree the final Top 10 research priorities.

We want this project to reflect the experiences of everyone affected by eczema.

We will work to include:

• Children and young people

• People from different ethnic and cultural backgrounds

• People living in rural communities

• People facing barriers to healthcare

• Individuals and families whose voices are not always heard in research

We will provide different ways to take part and aim to make all information clear, accessible, and inclusive.