Your EB research priorities
In June 2025 we published the list of research priorities for the four main types of EB.
These research priorities are based on key unanswered EB questions shared by the global EB community. This is people living with EB, families, carers, and health and social care professionals.
The research priorities were determined through the EB Priority Setting Partnership (EB PSP). This year-long study was led by DEBRA UK. We collaborated with other DEBRA patient support organisations and EB charities.
Find out more about the EB research priorities, how they were identified, and how they could shape the focus of future EB research.
The EB Priority Setting Partnership started in summer 2024 when EB questions were gathered through an online survey. 531 members of the global EB community completed the survey.
A total of 2800 questions were received. Each was then verified as being true by a steering group. This included people living with EB, health and social care experts, and representatives from the partners.
The study followed the James Lind Alliance (JLA) research method. In the JLA method, an unanswered question is deemed true when there is no up-to-date, reliable research evidence that directly answers it.
At this stage, 304 questions were removed due to research evidence being available. The true unanswered questions were then refined to 62 that reflected the overall themes of the original questions submitted.
A second online verification survey was conducted in November 2024. This asked participants to select up to ten of the 62 shortlisted questions that were most important to them. This survey was completed by 865 members of the global EB community.
The results of the second survey identified 17 research questions for each type of EB that were of key importance to the EB community. The final stage of the study was to create a top ten for each type of EB from these 17. This was conducted through several small group workshops in February and March 2025, each specific to the type of EB.
The small number of people living with kindler epidermolysis bullosa (KEB) meant that a KEB specific workshop was not possible. Instead, the top 19 research priorities are presented. These are based solely on the unanswered questions gathered in the first survey and prioritised in the second survey.
The summary report provides an overview of the EB Priority Setting Partnership and lists the research priorities for each type of EB.
Read the EB PSP summary report now.
For a more in-depth overview, you can read the full EB PSP report.
We are one of the largest funders of EB research globally. We have invested over £22m and established much of what is now known about EB.
Some of our existing research will address some of the EB community’s unanswered research questions. However, there will be gaps.
We will now use the data from the EB PSP to review our current research programme. We will check whether our existing projects address the key unanswered EB questions. If they don’t, we will seek to commission research that does. This could be research we commission and fund ourselves, or research where we partner with others.
We hope that other organisations will also use this insight. Ensuring that all EB specific research directly address the key needs of the EB community.
“I felt every discussion we had about the priorities was done with extreme consideration by each and every participant and it was all done in a very respectful way”.
“The workshops were fantastic. This was the first of its type I participated in, but I feel even as a patient I learned a great deal and it was an extremely valuable experience that I am so grateful to have been a part of. Also, a huge thank you to the facilitators and all those helping drive these goals forward”.
“It was my first time participating in activities like this, but I felt very comfortable and welcomed. This workshop also pushed my self-confidence. I felt so heard and appreciated. I really had the feeling that my opinion was wanted and that was an empowering experience for me”.
This study is another great example of community engagement, working together as a global EB community to improve outcomes for everyone directly affected by EB.
Without the involvement of people living with all types of EB, their families/friends, carers, and the EB healthcare professionals, this study simply would not have been possible.
Thank you to everyone who gave up their time to participate in this study.
Thank you also to all our partners who co-funded this study, to the members of the EB PSP steering group who gave their time and provided expert input, and to the teams at the JLA and Synergy Healthcare Research, for your help in delivering this important study.
