Integration, Cataloguing and FAIRification of Biobank and Clinical Data

KACOVÁ, Radoslava, Zdenka DUDOVÁ, Tomáš HOUFEK, Radovan TOMÁŠIK and Roman HRSTKA. Integration, Cataloguing and FAIRification of Biobank and Clinical Data. In Europe Biobank Week Congress 2024. 2024.

Basic information

• Original name: Integration, Cataloguing and FAIRification of Biobank and Clinical Data
• Authors: KACOVÁ, Radoslava (703 Slovakia, guarantor, belonging to the institution), Zdenka DUDOVÁ (203 Czech Republic), Tomáš HOUFEK (203 Czech Republic), Radovan TOMÁŠIK (703 Slovakia) and Roman HRSTKA (203 Czech Republic).
• Edition: Europe Biobank Week Congress 2024, 2024.

Other information

• Original language: English
• Type of outcome: Presentations at conferences
• Field of Study: 10200 1.2 Computer and information sciences
• Country of publisher: Austria
• Confidentiality degree: is not subject to a state or trade secret
• WWW: Europe Biobank Week Homepage
• Organization unit: Faculty of Informatics
• Keywords in English: FAIRification; data management; sensitive data; data reusability
• Tags: data management, data reusability, FAIRification, sensitive data
• Tags: International impact

Abstract

Sequencing of somatic DNA generates a vast amount of data with the potential for secondary usage in research, however, sharing this data for research purposes is challenging. This is often due to inadequate description, management, and the absence of a platform for presenting its existence. Associated issues include high capacity demands for storing large volumes of data and ensuring their security and long-term sustainability. Data is not only exposed to the risk of complete loss due to the degradation of storage media, often stored unprofessionally, but their retrospective retrieval and linking to other data for the same patient are complicated due to inconsistently used identifiers and labels. This study aimed to design a method for managing sensitive hospital data and establish the foundations of an integration centre that ensures data compliance with the so-called FAIR principles. These principles ensure that data is findable, accessible, interoperable, and ultimately reusable. The output of the study is a data management proposal, within which a metadata catalogue was created as a unified platform for exposing metadata, and a cloud environment was designed for storing sensitive data using the SensitiveCloud service. The purpose of the poster is to inform about the newly established data pipeline, which can serve as inspiration for biobanks wishing to offer their requestors associated data (such as sequencing, radiological, etc.) alongside biological samples. These data have the potential to enrich research and provide interesting insights into the world of medicine.