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The German Central Health Study Hub - A Service to Find and Publish Clinical, Public Health and Epidemiolocal Studies and Associated Documents.
Darms, Johannes; Clemens, Vera; Gonzalez-Ocanto, Marisabel; Brünings-Kuppe, Claudia; Cici, Selim; Fluck, Juliane.
Afiliación
  • Darms J; ZB MED - Information Centre for Life Sciences, Cologne, Germany.
  • Clemens V; ZB MED - Information Centre for Life Sciences, Cologne, Germany.
  • Gonzalez-Ocanto M; ZB MED - Information Centre for Life Sciences, Cologne, Germany.
  • Brünings-Kuppe C; Leibniz Institute for Prevention Research and Epidemiology - BIPS, Bremen, Germany.
  • Cici S; Leibniz Institute for Prevention Research and Epidemiology - BIPS, Bremen, Germany.
  • Fluck J; ZB MED - Information Centre for Life Sciences, Cologne, Germany.
Stud Health Technol Inform ; 317: 129-137, 2024 Aug 30.
Article en En | MEDLINE | ID: mdl-39234715
ABSTRACT

INTRODUCTION:

The German Central Health Study Hub is a service that was initially developed at short notice during the COVID-19 pandemic. Since then, it has been expanded in scope, content, active users and functionality. The service is aimed at two main audiences data provider and data consumers. The former want to share research data from clinical, public health and epidemiological studies and related documents according to the FAIR criteria for research data, and the latter want to find and ultimately reuse relevant research data in the above areas.

METHODS:

The service connects both groups via graphical and programmatic interfaces. A sophisticated information model is employed to describe and publish various research data objects while obeying data protection and fulfilling FAIR requirements. The service is being developed in a demand-driven manner with extensive user interaction.

RESULTS:

A free-to-use service, built on open-source software (Dataverse, MICA, Keycloak), accessible via a web-browser. In close collaboration with users several features (ranging from collection to group items to combined data capture via API and UI) were created. The adoption of the service increases continuously and results in over 1,970 research data objects in June 2024.

CONCLUSION:

The service fills a marked gap and connects both user groups, yet it still needs to be improved in various dimensions (features, content, usage). The impact on the community needs to be further assessed. Despite recent legislative changes (GDNG, EHDS), the system improves the findability of sensitive data, provides a blueprint for similar systems and shows how to create a useful and user-friendly service together with users.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: COVID-19 Límite: Humans País/Región como asunto: Europa Idioma: En Revista: Stud Health Technol Inform Asunto de la revista: INFORMATICA MEDICA / PESQUISA EM SERVICOS DE SAUDE Año: 2024 Tipo del documento: Article País de afiliación: Alemania Pais de publicación: Países Bajos
Texto completo
Añadir a Mi BVS
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: COVID-19 Límite: Humans País/Región como asunto: Europa Idioma: En Revista: Stud Health Technol Inform Asunto de la revista: INFORMATICA MEDICA / PESQUISA EM SERVICOS DE SAUDE Año: 2024 Tipo del documento: Article País de afiliación: Alemania Pais de publicación: Países Bajos