This is a DEBRA UK-led project, and we are being guided by the James Lind Alliance in their robust method for identifying the key unanswered questions for EB. This involves forming a “Priority Setting Partnership” (PSP), represented by many different people and organisations in the EB Community, to drive the project forwards. We are collaborating with DEBRA Canada and DEBRA Ireland, and we will be reaching out to many other organisations in the UK and globally with an interest in EB.

Our EB PSP Steering Group guiding this work comprises DEBRA UK members, DEBRA Canada and DEBRA Ireland members, EB healthcare professionals, DEBRA UK staff, Synergy Healthcare Research and a James Lind Alliance consultant. Synergy Healthcare Research is designing and running the surveys for this project, and they will be analysing the data as the Information Specialists for this project.