DEBRA Research and University Medical Center Groningen Launch Dedicated Clinical Trial Site for Epidermolysis Bullosa
核心洞察
DEBRA Research gGmbH (搜索) and the University Medical Center Groningen have established a dedicated clinical trial site for Epidermolysis bullosa (搜索) (EB), strengthening research infrastructure for this rare genetic skin disorder.
The collaboration will enhance clinical trial capacity in a region with recognized expertise in EB diagnosis and care, led by Principal Investigator Dr. Marieke C. Bolling.
DEBRA Research is supporting the international COSEB project to standardize outcome measurements across EB studies, ensuring future trials generate robust and comparable data.
DEBRA Research gGmbH (搜索), a global non-profit organization dedicated to advancing research and drug development for Epidermolysis bullosa (搜索) (EB), and the University Medical Center Groningen (UMCG) in the Netherlands have announced the establishment of a dedicated EB clinical trial site at the UMCG. The partnership, announced on January 19, 2026, strengthens translational EB research infrastructure and expands clinical trial capacity in a region recognized for its expertise in the diagnosis and care of people living with EB.
Addressing Critical Infrastructure Needs in Rare Disease Research
Epidermolysis bullosa (搜索) is a group of rare and painful genetic skin disorders characterized by extremely fragile skin, leading to blisters and chronic wounds from even minor friction or trauma. Specialized trial sites are essential for successful therapy development in rare diseases, as they centralize expertise, improve trial efficiency and recruitment, and ensure high-quality, patient-centric approaches.
The UMCG Center of Expertise for Blistering Diseases brings extensive clinical experience and a strong commitment to advancing EB research. Under the leadership of Principal Investigator Dr. Marieke C. Bolling, the Groningen site is now equipped to conduct both company-sponsored and investigator-initiated clinical trials. The site will also participate in emerging international EB initiatives, such as the planned EB Registry and the Clinical Trial Network, and contribute to the scientific community through publications and shared data.
Standardizing Outcome Measurements Through COSEB
DEBRA Research is supporting the international project "Core Outcome Sets for Epidermolysis Bullosa (搜索) (COSEB)", initiated and led by the Groningen team. COSEB aims to harmonize and optimize outcome measurement across EB studies, ensuring that future clinical trials generate robust, comparable, and patient-relevant data.
"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," said Dr. Marieke Bolling, Head of the EB part of the UMCG Center of Expertise for Blistering Diseases.
Building Foundation for Therapeutic Progress
"Robust infrastructure is one of the most important enablers of progress in rare diseases," said Christoph Coch, Managing Director of DEBRA Research. "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."
Established Expertise in EB Care
The University Medical Center Groningen is home to the Dutch National Expertise Center for Blistering Diseases, which includes EB. The EB Center in Groningen is led by Dr. Marieke Bolling and is responsible for the diagnosis, care and treatment of all people with EB in the Netherlands. It also provides care to patients from neighboring countries, together serving over 500 patients across all age groups.
The Dutch EB Center has been in existence for more than 30 years and has built a detailed and extensive national registry. Over the years, it has contributed significantly to improving diagnosis and care, as well as to the development and investigation of novel therapies for EB worldwide. The goals of the center are to provide every patient with an early and precise diagnosis, deliver the best possible care – preferably in the home setting – and ultimately make socially and financially acceptable, targeted, disease-modifying therapies available to all patients.
By reinforcing local capacity in Groningen and contributing to the international EB research infrastructure, this collaboration represents a meaningful step toward accelerating therapeutic innovation for people living with EB worldwide.