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NFDI4Health Local Data Hubs Implementing a Tailored Metadata Schema for Health Data

Abstract (Expand)

Introduction: NFDI4Health is a consortium funded by the German Research Foundation to make structured health data findable and accessible internationally according to the FAIR principles. Its goal is …s. Its goal is bringing data users and Data Holding Organizations (DHOs) together. It mainly considers DHOs conducting epidemiological and public health studies or clinical trials. Methods: Local data hubs (LDH) are provided for such DHOs to connect decentralized local research data management within their organizations with the option of publishing shareable metadata via centralized NFDI4Health services such as the German central Health Study Hub. The LDH platform is based on FAIRDOM SEEK and provides a complete and flexible, locally controlled data and information management platform for health research data. A tailored NFDI4Health metadata schema for studies and their corresponding resources has been developed which is fully supported by the LDH software, e.g. for metadata transfer to other NFDI4Health services. Results: The SEEK platform has been technically enhanced to support extended metadata structures tailored to the needs of the user communities in addition to the existing metadata structuring of SEEK. Conclusion: With the LDH and the MDS, the NFDI4Health provides all DHOs with a standardized and free and open source research data management platform for the FAIR exchange of structured health data.

Authors: Xiaoming Hu, Haitham Abaza, Rene Hänsel, Masoud Abedi, Martin Golebiewski, Wolfgang Müller, Frank Meineke

Date Published: 30th Aug 2024

Publication Type: InProceedings

Using Health IT Standards to Facilitate Metadata Exchange Between Research Data Management Systems

Abstract (Expand)

The National Research Data Infrastructure for Personal Health Data (NFDI4Health) uses Local Data Hubs (LDHs) to manage locally research studies, documents and sensitive personal data to support controlled …ort controlled data sharing. While research data management (RDM) systems facilitate the storage and preparation of data and metadata as well as organizational access, they often lack support for interoperability standards of the application domain. To support the exchange with external registries of research studies, we chose 17 attributes to characterize the most relevant aspects of clinical trials (in the following named “metadata profile”). We implemented the metadata profile in the RDM system FAIRDOM SEEK using core attributes and SEEK’s extended metadata feature and created a mapping conforming to the Health Level 7 Fast Healthcare Interoperability Resources (FHIR) standard version R4. Finally, we implemented a prototype application interface for exports in FHIR-JSON format. We plan to extend the interface to serve central registries and support specific FHIR Implementation Guides from various use cases.

Authors: Matthias Löbe, Xiaoming Hu, Sophie A.I. Klopfenstein

Date Published: 22nd Aug 2024

Publication Type: Journal

Making Epidemiological and Clinical Studies FAIR Using the Example of COVID-19

Abstract (Expand)

Abstract FAIRification of personal health data is of utmost importance to improve health research and political as well as medical decision-making, which ultimately contributes to a better health of …utes to a better health of the general population. Despite the many advances in information technology, several obstacles such as interoperability problems remain and relevant research on the health topic of interest is likely to be missed out due to time-consuming search and access processes. A recent example is the COVID-19 pandemic, where a better understanding of the virus’ transmission dynamics as well as preventive and therapeutic options would have improved public health and medical decision-making. Consequently, the NFDI4Health Task Force COVID-19 was established to foster the FAIRification of German COVID-19 studies. This paper describes the various steps that have been taken to create low barrier workflows for scientists in finding and accessing German COVID-19 research. It provides an overview on the building blocks for FAIR health research within the Task Force COVID-19 and how this initial work was subsequently expanded by the German consortium National Research Data Infrastructure for Personal Health Data (NFDI4Health) to cover a wider range of studies and research areas in epidemiological, public health and clinical research. Lessons learned from the Task Force helped to improve the respective tasks of NFDI4Health.

Authors: Iris Pigeot, Wolfgang Ahrens, Johannes Darms, Juliane Fluck, Martin Golebiewski, Horst K. Hahn, Xiaoming Hu, Timm Intemann, Elisa Kasbohm, Toralf Kirsten, Sebastian Klammt, Sophie Anne Ines Klopfenstein, Bianca Lassen-Schmidt, Manuela Peters, Ulrich Sax, Dagmar Waltemath, Carsten Oliver Schmidt

Date Published: 1st Jul 2024

Publication Type: Journal

Bioschemas Resource Index for Chem and Plants

Abstract (Expand)

As part of the BioHackathon Europe 2023, we here report on the progress of the hacking team preparing a resource index and knowledge graph based on the JSON-LD Bioschemas markup from several resources …al resources in the life- and natural sciences, predominantly from the fields of plant- and (bio)chemistry research. This preliminary analysis will allow us to better understand how Bioschemas markup is currently used in these two communities, so we can take actions to improve guidelines and validation on the Bioschemas markup and the data providers side. The lessons learnt will be useful for other communities as well. The ultimate goal is facilitating and improving interoperability across resources.

Authors: Daniel Arend, Alessio Del Conte, Manuel Feser, Yojana Gadiya, Alban Gaignard, Leyla Jael Castro, Ivan Mičetić, Sebastien Moretti, Steffen Neumann, Noura Rayya, Ginger Tsueng, Egon Willighagen, Ulrike Wittig

Date Published: 30th Jan 2024

Publication Type: Misc

Standardization landscape, needs and gaps for the virtual human twin (VHT)

Abstract (Expand)

This document created within the European Coordination and Support Action (CSA) of the EDITH (Ecosystem Digital Twins in Healthcare) project describes the current landscape of formatting and description … standards, terminologies and metadata guidelines for virtual human twins (VHTs). It refers to corresponding biomedical data, simulation models and workflows, as well as their metadata relevant for the definition, implementation, and simulation of Digital Twins in Healthcare (DTHs). It comprises both, ISO and community standards and lists the relevant standards and terminologies describing the modelling process, the integration of domain-specific medical research data with routine data from electronic health records, the documentation of data provenance, the validation process for biomedical, physiological, bio-signaling and other healthcare data and models. The document also reveals needs and gaps in the current standards landscape to drive the further development of such standards. Therefore, remarks and comments on how to improve existing standards or on areas for which standards are still missing are very welcome.

Author: Gerhard Mayer, Martin Golebiewski

Date Published: 17th Jan 2024

Publication Type: Tech report

EDITH standards implementation guide (IG)

Abstract (Expand)

This document provides a guideline for using and implementing standards, terminologies, and metadata guidelines when setting up, executing, and archiving virtual human twins. It is created within the …he European Coordination and Support Action (CSA) of the EDITH (Ecosystem Digital Twins in Healthcare) project. The aim of this implementation guide is two-fold: First it gives hints to the modelers, which steps they should follow in the model building process and which standards, terminologies, and guidelines (depending on their modelling domain) they should use in defining their biomedical and healthcare models. Second it is intended as a practical guide for implementers giving hints, which standards, terminologies, and guidelines should be supported in the long-term by the simulation environment consisting of the repository, the simulation platform, and the workflow execution engines. Initially it suffices if they support all formats and annotations used by the demonstrator use cases. To get an overview and access information on the standards, terminologies, and metadata guidelines referenced in this document, there also is an EDITH FairSharing collection available: https://fairsharing.org/4787

Author: Gerhard Mayer, Martin Golebiewski

Date Published: 17th Jan 2024

Publication Type: Tech report

A research data management (RDM) community for ELIXIR

Abstract (Expand)

Research data management (RDM) is central to the implementation of the FAIR (Findable Accessible, Interoperable, Reusable) and Open Science principles. Recognising the importance of RDM, ELIXIR Platforms …IXIR Platforms and Nodes have invested in RDM and launched various projects and initiatives to ensure good data management practices for scientific excellence. These projects have resulted in a rich set of tools and resources highly valuable for FAIR data management. However, these resources remain scattered across projects and ELIXIR structures, making their dissemination and application challenging. Therefore, it becomes imminent to coordinate these efforts for sustainable and harmonised RDM practices with dedicated forums for RDM professionals to exchange knowledge and share resources. The proposed ELIXIR RDM Community will bring together RDM experts to develop ELIXIR’s vision and coordinate its activities, taking advantage of the available assets. It aims to coordinate RDM best practices and illustrate how to use the existing ELIXIR RDM services. The Community will be built around three integral pillars, namely, a network of RDM professionals, RDM knowledge management and RDM training expertise and resources. It will also engage with external stakeholders to leverage benefits and provide a forum to RDM professionals for regular knowledge exchange, capacity building and development of harmonised RDM practices, keeping in line with the overall scope of the RDM Community. In the short term, the Community aims to build upon the existing resources and ensure that the content of these remain up to date and fit for purpose. In the long run, the Community will aim to strengthen the skills and knowledge of its RDM professionals to support the emerging needs of the scientific community. The Community will also devise an effective strategy to engage with other ELIXIR structures and international stakeholders to influence and align with developments and solutions in the RDM field.

Authors: Flora D'Anna, Niclas Jareborg, Mijke Jetten, Minna Ahokas, Pinar Alper, Robert Andrews, Korbinian Bösl, Teresa D’Altri, Daniel Faria, Nazeefa Fatima, Siiri Fuchs, Clare Garrard, Wei Gu, Katharina F. Heil, Yvonne Kallberg, Flavio Licciulli, Nils-Christian Lübke, Ana M. P. Melo, Ivan Mičetić, Jorge Oliveira, Anastasis Oulas, Patricia M. Palagi, Krzysztof Poterlowicz, Xenia Perez-Sitja, Patrick Ruch, Susanna-Assunta Sansone, Helena Schnitzer, Celia van Gelder, Thanasis Vergoulis, Daniel Wibberg, Ulrike Wittig, Brane Leskošek, Jiri Vondrasek, Munazah Andrabi

Date Published: 2024

Publication Type: Journal

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