ArticleFrontiers in medicine2026
Clinical trial awareness and participation attitudes among patients with epidermolysis bullosa and their caregivers: a nationwide cross-sectional study from Saudi Arabia.
Article in Frontiers in medicine, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Authors and funding
8 authors.
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Abstract
Background: Epidermolysis bullosa (EB) is a rare, inherited skin fragility disorder with significant disease burden and rapidly evolving therapeutic options. Clinical trial recruitment in rare diseases remains challenging; understanding patient perspectives is essential to designing patient-centred protocols. The objective of this study was to explore clinical trial awareness, motivators, and barriers among patients with EB and their caregivers in Saudi Arabia. Materials and methods: This cross-sectional study recruited participants of all EB subtypes and ages from the Saudi EB Registry. A 40-item structured, self-administered questionnaire assessed clinical background, knowledge and attitudes toward clinical trials, motivators and barriers for participation. Responses were recorded on a five-point Likert scale. Data were analysed using IBM SPSS Statistics version 23. Results: Thirty-five participants were enrolled; 68.6% were younger than 18 years and 57.1% of questionnaires were completed by caregivers. Knowledge about EB clinical trials was low in 80% of participants; the level of knowledge was statistically significantly associated with the desire to participate ( Conclusions: This study provides the characterisation of clinical trial awareness, motivators, and barriers among patients with EB and their caregivers. Patient education is the most actionable target for improving trial recruitment. The high prioritisation of symptom alleviation underscores the importance of incorporating patient-reported outcome measures as primary or co-primary endpoints in future EB trial design. Trial protocols in EB should minimise travel burden and invasive procedures, address paediatric-specific barriers including route of administration, frequency, and school absenteeism, and incorporate flexible, patient-centred designs to optimise enrolment across the EB community.
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