If you took part in the DEBRA UK led, global James Lind Alliance survey in June, you were one of over 530 people from around the world who did so. Thank you for telling DEBRA UK what unanswered questions you have about EB. By taking part you have helped set the future for EB research and strategies, making sure the research funded is relevant to you!
41 countries took part (with almost 40% of respondents from the UK, 10% Egypt, 8% Canada, 5% Republic of Ireland, 5% Australia and 4% USA). *
All types of EB were proportionately represented in the survey (45% EB simplex, 33% dystrophic EB, 8% junctional EB and 1% kindler EB).
Just over 80% of respondents were living with, or caring for those affected by, EB. And around 22% were healthcare professionals.
Around 27% of the healthcare respondents were dermatologists, 14% nurses, 5% mental health professionals, 4% social workers, and 3% dentists.
Two thirds of respondents were female, and almost 70% of respondents identified as white, 9% as Arab and 5% as Hispanic/latino.
The project steering group (which includes 10 DEBRA UK members, as well as representatives from DEBRAs Canada and Ireland) is busy looking through all the survey data now. In November they’ll share with you what unanswered questions the global EB Community wants answers for, and you can tell DEBRA UK which ones are most important to you.
In January 2025, they will be running two online workshops to work out what the final EB top 10 research priorities are, to help set DEBRA UK’s research strategy as well as those of other EB research funders around the world. If you’re interested in being involved, keep a look out for emails about the JLA, or sign up to be involved in the online workshops here - https://forms.office.com/e/NHrMKvC72a.
*all statistics from DEBRA UK JLA EB PSP 2024
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