Dystrophic Epidermolysis Bullosa Research Association (DEBRA) Research and the University Medical Center Groningen (UMCG), Netherlands have announced the launch of a dedicated clinical trial site at the UMCG to study epidermolysis bullosa (EB).
EB refers to a group of rare genetic skin disorders. The main symptom of these disorders is extremely fragile skin that causes frequent blisters and wounds, leading to debilitating pain.
UMCG is an established leader in the diagnosis and care of EB through its Center of Expertise for Blistering Diseases. The new collaboration and research site will drive EB research and increase the capacity for clinical research into EB.
The advantages of specialised trial sites include improved efficiency, greater recruitment and a patient-centric approach generated by centralising expertise within a dedicated location.
Dr Marieke C Bolling, head of the Center of Expertise for Blistering Diseases’ EB branch, said: “This support not only enables us to enhance care and research for the patients in our own centre, but also ensures that, through international collaboration, patients in other countries benefit from new insights generated by this process, hopefully leading to a faster and more efficient way of bringing effective therapies to patients.”
Dr Bolling has been appointed principal investigator at the new trial site, which will now host both company-sponsored and investigator-initiated trials. International EB initiatives, including the Clinical Trial Network and the upcoming EB Registry, will also be involved with research at the new site.
Additionally, DEBRA Research has launched its support for the ‘Core Outcome Sets for Epidermolysis Bullosa (COSEB)’ project. This project, both initiated and led by the team at UMCG, aims to improve the measurement of outcomes in EB studies.
An increase in specialised clinical trial capacity, combined with scientific contributions to research on EB, will mark a major development in approaches to this rare and debilitating disorder.
Christoph Coch, managing director of DEBRA Research, said: “By strengthening trial capacity in Groningen and supporting global initiatives like COSEB, we are helping create the foundation that researchers, clinicians and industry partners need to deliver meaningful therapeutic progress for the EB community.”