About the EB Priority Setting Partnership

 
DEBRA UK is being guided in this project by The James Lind Alliance. The JLA is a non-profit organisation that brings together patients, carers, and clinicians who live or work with a particular disease or condition. Following a robust and proven method, they work together to agree on the most important unanswered questions for their condition that can be addressed through research.

 
The goal is for one or more of those research priorities to be turned into a programme of research, and that this goes on to have a life-changing impact on the treatments or services available to patients. It also allows funders, like DEBRA UK, to understand what sort of research projects are most important to the EB community and to plan our research strategy accordingly. 

View the protocol here

 
What is happening right now?

Our Steering Group have met several times to kick off this project, agree the scope and have planned the global survey, which you can now take below.

 

 Take the survey now! 

 

This should take you around 12 minutes to complete, and DEBRA members who tested it for us said it was “easy to complete” with “very useful” prompts to help you think about your unanswered questions about EB. Change EB research and add your voice to this global project.

 

If you’re a DEBRA UK member, you can sign up to be a part of our Involvement Network, and be the first to hear about all the ways you can get involved with, and influence, our work.

 

Sign up to the involvement network