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EB patient survey on clinical trials published

Most EB patients want to participate in clinical trials but have Concerns, new survey published

The new study was prepared by researchers from the Paracelsus Medical University, in Salzburg, in collaboration with the specialty care center EB House Austria. The survey provided a 53-item questionnaire to EB patients and caregivers to determine attitudes toward clinical research and trial participation. The study found out that most people with Epidermolysis bullosa (EB) want to participate in clinical research for potential new therapies. The main challenges descbribed were travel distances to trial sites and the risk of treatment side effects. 

Responses from 36 participants (mean age of 25.7, age range 5 to 80) were analysed, most of them from Austria, but also several from Germany and Italy. 

Read the full publication on Orphanet Journal of Rare Diseases

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