Integration, Cataloguing and Management of Biobanking and Clinical Data Using FAIR Genomes Metadata Schema

In the dynamic environment of hospitals, valuable real-world data often remain underutilised despite their potential to revolutionize cancer research and personalised medicine. This study explores the challenges and opportunities in managing hospital-generated data, particularly within the Masaryk Memorial Cancer Institute (MMCI) in Brno, Czech Republic. Utilizing Next-Generation Sequencing (NGS) technology, MMCI generates substantial volumes of genomic data. Due to inadequate curation, these data remain difficult to integrate with clinical records for secondary use (such as personalised treatment outcome prediction and patient stratification based on their genomic profiles). This paper proposes solutions based on the FAIR principles (Findability, Accessibility, Interoperability, and Reusability) to enhance data sharing and reuse. The primary output of our work is the development of an automated pipeline that continuously processes and integrates NGS data with clinical and biobank information upon their creation. It stores the data in a special secured repository for sensitive data in a structured form to ensure smooth retrieval.

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Publication Details

Journal
Data Intelligence
Published
2025-02-01
DOI
https://doi.org/10.3724/2096-7004.di.2025.0005
Primary Topic
Research Data Management Practices
Type
article
Field-Weighted Citation Impact
0.00

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Integration, Cataloguing and Management of Biobanking and Clinical Data Using FAIR Genomes Metadata Schema

Zdenka Dudová, Ondřej Horký, Roman Hrstka, Thomas D. Houfek et al.
Data Intelligence
Research Data Management Practices
article

Integration, Cataloguing and Management of Biobanking and Clinical Data Using FAIR Genomes Metadata Schema

Zdenka Dudová, Ondřej Horký, Roman Hrstka, Thomas D. Houfek, Michal Růžička, Vít Nováček, Radovan Tomášik, Jan Kuráň, Radoslava Kacová
article en

Abstract

In the dynamic environment of hospitals, valuable real-world data often remain underutilised despite their potential to revolutionize cancer research and personalised medicine. This study explores the challenges and opportunities in managing hospital-generated data, particularly within the Masaryk Memorial Cancer Institute (MMCI) in Brno, Czech Republic. Utilizing Next-Generation Sequencing (NGS) technology, MMCI generates substantial volumes of genomic data. Due to inadequate curation, these data remain difficult to integrate with clinical records for secondary use (such as personalised treatment outcome prediction and patient stratification based on their genomic profiles). This paper proposes solutions based on the FAIR principles (Findability, Accessibility, Interoperability, and Reusability) to enhance data sharing and reuse. The primary output of our work is the development of an automated pipeline that continuously processes and integrates NGS data with clinical and biobank information upon their creation. It stores the data in a special secured repository for sensitive data in a structured form to ensure smooth retrieval.

Data IntelligenceVol. 7(1)
European Commission
Openalex Percentile: Top 96%
Research Data Management Practices
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