Global DEBRA EB research priority-setting project wins industry award

A landmark global research project commissioned by DEBRA UK and delivered in collaboration with the international epidermolysis bullosa (EB) community has received a prestigious healthcare industry award.

The 2025 EB Priority Setting Partnership (EB PSP), which followed the internationally recognised James Lind Alliance methodology, won the 2026 BOBI (Best of Business Intelligence) Award for Best Use of Innovation. The BOBI Awards recognise excellence, innovation, and impact across healthcare business insights.

The EB Priority Setting Partnership was designed to identify the most important unanswered research questions for the global EB community, ensuring that future research investment is guided by the priorities of those most directly affected by EB: people living with all types of EB, their families and carers, and healthcare professionals working in the field.

Working alongside research partner Synergy Healthcare, the project combined specialist survey and evidence-gathering expertise with the collaborative James Lind Alliance framework. This methodology is widely recognised for ensuring that research priorities reflect real-world need, rather than being driven solely by academic or commercial interests.

Judges praised the study for successfully bringing together voices from across the global EB community to provide a true 360-degree perspective on research priorities. They also highlighted the project’s clear explanation of the James Lind Alliance process and recognised the significance of its findings being shared in the UK House of Commons as part of wider advocacy for EB research.

This study was spearheaded by DEBRA UK in partnership with DEBRA Canada, DEBRA Ireland, EB Research Partnership, and Cure EB, demonstrating the strength of international collaboration in driving forward research priorities for the global EB community.

Read the full results of the JLA study here, or download the results below.

DEBRA-Priority-setting-partnership-JLA-results-booklet.pdf

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