Highlighting the most important questions in relation to EB research

• Primary Researcher: The James Lind Alliance Steering Group & Synergy Research UK
• Institution: Synergy Research UK
• Type of EB: All types of EB
• Funding amount: €11, 660 co-funded with Debra UK and Debra Canada
• Project length: 8 months

Due in 2025

The James Lind Alliance (JLA) is a non-profit making initiative bringing patients, carers and clinicians together in JLA Priority Setting Partnerships (PSPs). The JLA PSPs identify and prioritise unanswered questions or evidence uncertainties that they agree are the most important, so that health research funders are aware of the issues that matter most to the people who need to use the research in their everyday lives.

For this study to be a success, it’s essential that those affected by any of the four main types of EB take part – EB Simplex, Dystrophic EB, Junctional EB, Kindler EB. We have partnered with Debra UK and Debra Canada for this project, and together formed an EB Priority Setting Partnership which includes those impacted by EB and their families/carers, as well as healthcare professionals who work with those affected by EB and EB researchers. Together we’ll be engaging the EB community to help us understand what EB research should be focused on finding out and creating links with research partners to make it happen. The survey aims to uncover the most significant research questions regarding EB on a global basis. It is open to individuals impacted by any type of EB, their families/carers, healthcare professionals and EB researchers. The main goal of the study is to use the questions that are discovered from the survey to highlight areas of concern for the EB community worldwide so funders and researchers are aware of research areas they should prioritise.

Due in 2025