Biobank.ro – first of its kind in Eastern Europe

Biobank.ro is founded on a strong basis of scientific and technological excellence, heralding a new era in Romania’s biomedical research infrastructure. Formed through a strategic partnership between Egnosis (the project lead) and Pro-Vitam (the project partner), this initiative will establish Romania’s first private biobank built on a federated database network and a privacy-by-design architecture, enabling fast and collaborative research with a primary focus on rare and autoimmune diseases. Created primarily for research purposes, Biobank.ro integrates a digital data hub with a biological sample center to advance AI-driven medical research and strengthen Romania’s role in international scientific collaboration.

The concept and objectives were presented publicly for the first time at a press conference held on October 14, 2025.

Data is the driving force of AI research

According to Béla Bihari, CEO of Egnosis, the idea of Biobank.ro emerged from the company’s extensive involvement in Horizon Europe research consortia, where the main challenge is no longer algorithmic performance but the availability and quality of real, structured data. While Egnosis is a contributor to the development of predictive, machine learning–based prototypes with leading European partners, research progress is often hindered by slow access to reliable, high-quality datasets — sometimes for years — during which the technology itself continues to advance.

Drawing on the technological foundations and experience gained in the Horizon 2020 FeatureCloud project, the team developed Biobank.ro infrastructure concept as a direct response to this challenge.

The result is a unique biobank architecture, designed for research and secondary data use, with privacy-by-design principles integrated from the outset. Its mission is to establish a high-quality, ethically governed biobank that ensures fast, non-bureaucratic access to biological samples and research data. Starting from the Pro-Vitam Clinic facilities, the platform will evolve into a federated network, open to partners across Transylvania, Romania, and the broader European research ecosystem.

Project Timeline and Objectives

In the first year of the three-year project, the team aims to leverage its extensive network of over 150 partners to identify data types that are relatively easy to collect yet remain difficult to access in current research practice, and to publish an analytical overview based on these findings. In the following phase, the focus will shift to system architecture development, defining data structuring and standardization methods to create a flexible framework that enables seamless integration for clinics and medical practices of any size and location. The final phase marks the development of a personalized AI agent — an interactive tool designed to support stakeholders in secondary data analysis and decision-making, ultimately contributing to improved healthcare outcomes through access to high-quality data.

Rare and Autoimmune Diseases in Focus

Dr. Szilárd Fejer, Managing Director of Pro-Vitam Clinic, explained that Biobank.ro focuses initially on rare and autoimmune diseases, selected based on decades of clinical experience and data collected since the clinic’s foundation.

With over twenty years of digitally recorded patient information, Pro-Vitam has developed a clear understanding of the region’s health landscape and identified major gaps in the diagnosis and treatment of these conditions. Rare diseases affect roughly one in every 2,000 people in the EU, and around 80% of these have a genetic origin. Yet in Romania, many patients still lack a precise diagnosis, preventing participation in clinical studies that could target the underlying causes rather than just the symptoms.

The biobank aims to collect and analyze biological and genetic samples from patients affected by rare and autoimmune disorders, ensuring proper anonymization and ethical consent. By making these data accessible for research, the initiative seeks to improve diagnostic accuracy, enable international clinical trials, and contribute to a better understanding of immune system dysfunctions as well.

The Project in Numbers

Regional Leaders Emphasize Partnership, Vision, and Trust

Dr. András György Edler, President of the Covasna Chamber of Commerce and Industry, highlighted that R&D represents only about 2% of the county’s total business turnover, with most active companies operating in IT rather than scientific research. He noted that, much like in healthcare, the local economy still struggles with limited access to structured data, which hinders informed decision-making and regional development.

Árpád-András Antal, Mayor of Sfântu Gheorghe, congratulated the partners for their cooperation, calling such collaboration among independent enterprises a form of innovation in itself. He emphasized that the health and research sector will remain a key priority in the EU’s 2028–2034 funding cycle, positioning Biobank.ro well for future support. The Mayor also underlined the importance of public trust, stressing that long-term success depends on citizens feeling personally connected to research initiatives that ultimately benefit the health and well-being of future generations.

Partner with us!

As an integral part of the emerging European biobank ecosystem, Biobank.ro welcomes collaboration with EU research consortia, academic institutions, healthcare providers, and technology partners committed to advancing data-driven, privacy-preserving biomedical research. At this stage, the team is mapping the research landscape and identifying potential contributors in fields such as data governance, ethical frameworks, AI model development, and clinical integration — key pillars of the biobank’s federated architecture.

Researchers and institutions wishing to collaborate can express their interest by filling in the partnership form on Biobank.ro. This will enable direct contact with our coordination team and serve as the first step toward shaping a trusted, collaborative research ecosystem in Romania and beyond.