Around the world with EB

I am Dr Paul Dimmock, research associate with the Global Psoriasis Atlas at the University of Manchester and am working on a grant from DEBRA UK to count how many people have EB around the world.

Which aspect of EB are you most interested in?

I have been involved with skin research for many years, recently focussing on psoriasis. We are now interested in doing what we have done for psoriasis with EB. This involves mapping out how many people have EB in different countries and regions around the world. This work, looking at how many people have a condition, is called epidemiology. It looks at the prevalence of a condition – which is how many people have it in total, and the incidence, which is how many new cases of the condition are occurring each year.

What difference will your work make to people living with EB?

Knowing how many people get EB and have EB is important for many reasons. It can tell us what resources are needed to support people with EB and help medical services plan for future needs. Calculating accurate rates of EB around the world can help in working out why EB occurs, especially when people from different countries get EB more or less often. It can give clues to any genetic causes but also any environmental aspects which might make EB get worse or better.

Who/what inspired you to work on EB?

In May 2025, the 78th World Health Assembly adopted a resolution recognising skin diseases as a global health priority. The resolution marked a transformative step toward addressing the needs of over two billion people affected by skin conditions worldwide.

This milestone moves to elevate skin health on the global public health agenda and we are inspired to use our knowledge of global mapping to help support research on underserved skin conditions, including EB.

The clinical lead in my research, Prof Chris Griffiths, is an independent advisor to DEBRA UK and inspired us to expand our work mapping skin diseases to include EB.

What does the funding from DEBRA UK mean to you?

Funding from DEBRA UK will allow us to complete the first ever study of global rates of EB. Studies on rare conditions can be difficult to raise funding for, so DEBRA’s grant will allow us to undertake a stand-alone, high quality systematic review of all published work on EB prevalence and incidence. I am very grateful to DEBRA for the opportunity to support research in such an important area.

What does a day in your life as an EB researcher look like?

A day in the life of a researcher like me involves a lot of computer work. This project involves surveying all of the published medical studies on EB. This means we have to carefully develop a plan to identify the published studies we can use in this research. Fortunately, almost all published studies are available online now, although I do miss the many hours I used to spend in the University library searching dusty old journals to track down studies. The work also involves reading, a LOT of reading! For our last review, a colleague and I had to independently read the summaries of over 20,000 published research studies to select suitable studies. We have to agree on which studies to include and then we narrow this down to a few hundred studies that we read in depth to extract rates for a condition. This means we are then back to the computer to use statistical apps to analyse the data we extract. This step takes a lot of time as skin studies, including EB studies, tend to be done in high income countries such as the UK, Europe and the USA. But skin problems occur in all countries and regions of the world, so we must develop some complex computer models to try and predict what the rates of EB will be in other countries. We cannot say if we will find enough studies to be able to model EB across the world, but that in itself is an important result. It means we can highlight to national and international healthcare bodies that more research needs to be done to identify how often EB occurs. Work on psoriasis has increased enormously in recent years thanks to researchers like us working alongside bodies such as the World Health Organisation (WHO). WHO have highlighted the increased health burden for people with skin conditions across the world.

Who’s on your team and what do they do to support your EB research?

We have a small team of researchers and project managers led by Prof Darren Ashcroft, professor of pharmacoepidemiology, and Prof Chris Griffiths, professor of dermatology and DEBRA advisor. Tom Rogers and Alice Silk organize all our research and help manage a worldwide group of country coordinators who contribute our work.

I also work with Dr Alison Wright who does detailed statistical analysis of our results and will be working with me on the EB project.

How do you relax when you’re not working on EB?

When I’m not working on EB I do a lot of reading, even though I can spend a week or more at a time reading non-stop for work! The photo above shows me and members of the research team getting in the winter Olympic spirit, albeit in Manchester Science Park!

I spend a lot of time gardening and have an allotment, which isn’t very productive at the moment in March-April. This time used to be known as the ‘hungry gap’ in the UK, but I have just dug up the last of my parsnips and some more unusual European root crops, salsify (the vegetable oyster!) and scorzonera. All my gardening and growing is organic and ‘chemical free’ – perhaps odd for someone who worked extensively in chemistry research in my early career. I use the crops I grow in cooking and am very interested in traditional methods of preserving foods, and also do local foraging – eating weeds is something we should all do as who decides what is a food and what is a weed?

I also spend time trying to catch up with the youngest of my six grown-up children, when I can pin them down to being somewhere at an agreed time, which is strangely more difficult now we are all easily connected through social media.