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Biobank.ro - rare and autoimmune disease research project launched in Sfantu Gheorghe

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The Biobank.ro project which aims to create Romania's first private bio data and samples repository for research purposes was launched on Tuesday in Sfantu Gheorghe - Covasna County.

The initiative, developed by provider of industrial software solutions Egnosis SRL and the Pro-Vitam Diagnostic and Treatment Center, aims to collect and manage digital medical data and biological samples for biomedical research, and to develop advanced medical solutions, including by the use of AI.

The total investment is almost 3 million euros, of which 1.8 million in EU funding, and the project's duration is an estimated three years.

The infrastructure component includes the expansion of the Egnosis headquarters in Sfantu Gheorghe, a passive certified building, with approximately 400 sqm, to accommodate laboratories, collection centers and administrative offices.

Egnosis CEO Bihari Bela told a press conference on October 14 that the project is intended to support biomedical research through rapid access to data usable in clinical trials, particularly for rare and autoimmune diseases.

He detailed that the project's stages include a regional and European assessment of data needs, data collection and standardization, and the development of the Biobank.ro platform, allowing the design of an AI prototype to support data analysis and the generation of clinical reports for use in personalized medicine.

The project's ultimate goal is to create a digital network that allows rapid and secure access to medical data for research, contributing to innovation in personalized medicine and strengthening the regional biomedical research infrastructure.

'In the 21st century, data is the new gold. (...) Official access to real data while respecting the GDPR is difficult in Europe and we believe that we can act as a data provider, as a data mediator, a data supplier for these projects. This is where the idea of founding or creating a biobank started; the biobank should have two components: one for collecting and storing biological samples, and a hub, a database through which we offer access to structured quick-to-access data with the exclusive purpose of research. (...) So, it will be Romania's first private biobank exclusively for research purposes,' declared Bihari Bela.

Project partner Pro-Vitam will contribute clinical experience and retrospective digital data spanning over two decades, facilitating data collection and clean-up for secondary research.

Pro-Vitam CEO Fejer Szilard mentioned that a screening will be carried out as part of the project, and the collected data will be used for scientific purposes, with the consent of the patients and under full observance of information confidentiality and security.

'The project primarily focuses on two groups of ailments: rare diseases and autoimmune diseases. (...) In the last 20 years, we have observed, for example, that rheumatoid arthritis and autoimmune thyroid diseases are on an upward trend in this region, but also in Europe. (...) The project includes a screening where we will collect samples from patients diagnosed with these two types of conditions. (...) Data protection is a very sensitive issue, (...) so we will take great care that this data is securely stored and that the patient who gives their consent for the use of this data truly feels that it is safe. Research data is always anonymized when it is sent further,' declared Fejer Szilard.

The developers also mentioned that the project is designed to be interoperable with European biobank networks and that they are open to partnerships with hospitals, universities and research institutes around the world. As a matter of fact, Egnosis and Pro-Vitam are already working with international partners on research projects in the field of digital health. AGERPRES (RO - writing by: Oana Malina Negrea; EN - writing by: Simona Klodnischi)

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