DEBRA Research and the University Medical Center Groningen (UMCG) have established a dedicated clinical trial site for Epidermolysis Bullosa (EB) at the UMCG in the Netherlands, strengthening both local and international research infrastructure for this rare genetic skin disorder. The collaboration aims to improve access to studies, support patient-focused research, and contribute to global efforts to standardise outcomes in EB trials.

EB is a group of rare and painful genetic conditions characterised by fragile skin, leading to chronic wounds and blisters from minor friction. The Groningen Center of Expertise for Blistering Diseases brings extensive clinical experience and is now equipped, under principal investigator Marieke Bolling, to conduct company-sponsored and investigator-initiated clinical trials. The site will also participate in international EB initiatives, including the planned EB Registry and the Clinical Trial Network, and contribute to scientific publications and shared data.

Bolling said: “This support not only enables us to enhance care and research for the patients in our own center, 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.”

The collaboration also supports the international project COSEB (Core Outcome Sets for Epidermolysis Bullosa), led by the Groningen team. COSEB aims to harmonise and optimise outcome measurement across EB studies, ensuring that future clinical trials generate robust, comparable, and patient-relevant data.

Christoph Coch, managing director of DEBRA Research, said: “Robust infrastructure is one of the most important enablers of progress in rare diseases. 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.”

The Groningen EB Center provides diagnosis, care, and treatment for all people living with EB in the Netherlands and also serves patients from neighbouring countries, with over 500 patients of all ages. Established more than 30 years ago, the center maintains a detailed national registry and has contributed to the development of novel EB therapies worldwide.

DEBRA Research, the non-profit research arm of DEBRA Austria, collaborates with academia, biotech, pharma, patient organisations, and regulatory bodies to advance translational research and clinical development for EB. Its mission is to accelerate the discovery and development of treatments that improve quality of life for people living with EB and ultimately create a future where EB is curable.