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EB community-led research: James Lind Alliance
Do you still have unanswered questions about EB? Or have you ever received a response to your question about EB that wasn’t fully answered?
You’re not the only one. Over 800 hundred people, who live with EB, care for someone with EB, or who work with those affected by EB, have told us their top 10 unanswered questions about EB. The EB community are now taking part in our online workshops to help us confirm and rank the final top 10 questions. These questions will become DEBRA’s research strategy for years to come and will influence EB research around the globe. We hope to share the results soon.
About the workshops
The workshops will each comprise two three-hour long, online sessions (on Zoom) a week apart. We are being led by the data from the survey, and we’re planning on running:
- Workshop focusing on Dystrophic EB and Junctional EB are now FULL – split over two days, Monday 24 February 12:30pm – 3:30pm, and Monday 3 March 12:30pm – 3:30pm.
- Workshop focusing on EB Simplex is now FULL – split over two days, Monday 10 March 12:30pm – 3:30pm, and Monday 17 March 12:30pm – 3:30pm.
- We are still deciding how to take forward the priorities for Kindler EB, given the very small numbers involved
We’ll ask each workshop to review the lists of questions from two surveys the global EB community have completed this year. The workshop participants will share their knowledge and experiences of EB to decide the final top 10 questions, and rank them in priority order.
Who can join?
We would like the group of people taking part in these workshops to come from a wide range of experiences and backgrounds, with different experiences of living with, caring for, or working with different types of EB.
You don’t need particular skills or experience to join an online workshop, other than your lived or professional experience of EB. But we are looking for people who:
- are 18 or over
- are prepared to share their experiences and opinions and listen to other people’s experiences and opinions
- are prepared to participate in group discussions
- can connect to an online Zoom meeting
- have a good grasp on English, because the workshops will be conducted in English
About the project
DEBRA (UK) is leading this project with The James Lind Alliance because we believe that our research strategy should be determined by the EB community. Research strategies are often led by the interests of academics and researchers. But we want our research strategy to be led by you – the people living with EB, or caring for loved ones every day, and the professionals that support you.
We have partnered with DEBRA Ireland, DEBRA Canada, DEBRA International, and EB Research Partnership for this project, and together have formed an EB Priority Setting Partnership which includes patients and carers affected by EB, and healthcare professionals.
Latest news
The global EB community responded to our first survey (over 600 responses) in the summer, and our second survey (over 800 responses) in November 2024, and have told us their top 10 unanswered questions about EB. Our steering committee have analysed these hundreds of questions and are now planning the online prioritisation workshops for January 2025.
