EB icmasının rəhbərlik etdiyi tədqiqat: James Lind Alliance

EB ilə bağlı hələ də cavabsız suallarınız varmı? Yoxsa EB haqqında sualınıza tam cavablandırılmamış cavab almısınızmı?

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 global EB community recently took part in 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.

And we can now share the results with you.

Layihə haqqında

DEBRA (UK) led 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 partnered with Cure EB, 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.

Nəticələr var

This involvement project is now complete, and we have now revealed the top 10 research priorities for each EB type. 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 these priorities were discussed and ranked by the global EB community (those directly affected by EB, carers, and healthcare professionals).

Siz read the full summary report of the results and project here, and find out more below.