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<p>Patient registries are a&#xa0;central instrument of medical care research. The data collected serve to represent the reality of care, support the development of evidence-based guidelines and promote the translation of research results into clinical practice.</p><p>This work emphasizes the importance of collaborative research approaches through patient registries, with a&#xa0;focus on the compliance with complex regulatory frameworks.</p><p>Methodological approaches such as team science and compliance with quality principles of data infrastructure and data integrity (FAIR and ALCOAplus) are tools for optimizing the collaboration between institutions at different levels of care or the quality of a&#xa0;patient registry.</p><p>Compliance with ethical, legal and regulatory requirements, such as the General Data Protection Regulation (GDPR) and medical guidelines for the operation of patient registries, is essential for the successful evaluation of such registry data.</p><p>This article aims to show that the translation into various areas of academic medicine is possible and can be facilitated through the use of registry data. Patient registries build a&#xa0;bridge between the reality of care and research and also contribute to improving medical training.</p>

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Kollaborative Forschung und Patientenregister: Anforderungen und Perspektiven für Grundlagenforscher

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2025年1月24日

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  • Georg Jung,
  • Thomas Lattmann,
  • Maria-Elisabeth Leinweber,
  • Nicolas Attigah,
  • Maani Hakimi

摘要

Patient registries are a central instrument of medical care research. The data collected serve to represent the reality of care, support the development of evidence-based guidelines and promote the translation of research results into clinical practice.

This work emphasizes the importance of collaborative research approaches through patient registries, with a focus on the compliance with complex regulatory frameworks.

Methodological approaches such as team science and compliance with quality principles of data infrastructure and data integrity (FAIR and ALCOAplus) are tools for optimizing the collaboration between institutions at different levels of care or the quality of a patient registry.

Compliance with ethical, legal and regulatory requirements, such as the General Data Protection Regulation (GDPR) and medical guidelines for the operation of patient registries, is essential for the successful evaluation of such registry data.

This article aims to show that the translation into various areas of academic medicine is possible and can be facilitated through the use of registry data. Patient registries build a bridge between the reality of care and research and also contribute to improving medical training.