Uniform basic data set for clinical studies of the German Centers for Health Research

The German Centers for Health Research (DZG) are dedicated to researching the major widespread diseases, which are often interlinked. Comorbidities and the side effects of therapies can have an impact on various organ systems, which requires a holistic understanding of disease interrelationships. In order to meet this need, the DZG have developed a common basic data set for clinical studies. This enables the uniform and structured recording of clinical data and its analysis beyond disease boundaries.

Compare patient cohorts and recognise correlations

Harmonised data collection across different clinical pictures provides valuable insights into common risk factors, disease mechanisms and therapeutic approaches. Particularly in the case of diseases with similar characteristics, such as cardiovascular diseases and metabolic diseases, the basic data set allows patient cohorts to be compared in a more targeted manner and links to be recognised that would otherwise remain undetected. One example: analysing inflammatory markers in patients with diabetes and heart failure could provide new insights into how chronic inflammation influences the development of both diseases - and possibly enable new, joint therapies.

The basic data set comprises 28 mandatory items that form the basis for identifying and analysing patient collectives across the DZG. In addition, an extended data set with 100 further items is available, which are relevant for cross-indication scientific questions. Disease-specific items are additionally recorded in the respective centres in order to support specific research requirements.

Conduct research across indications - understanding disease mechanisms

The DZG basic dataset helps researchers to identify cohorts of patients across the various research centres and creates new opportunities for collaboration and data exchange. Researchers can request and use data on this basis to answer specific scientific questions. The expanded dataset also makes it possible to harmonise multidisciplinary studies and thus gain new insights into disease mechanisms that exceed the scope of individual diseases. The unified datasets promote collaboration between the DZGs, as they facilitate data sharing and support cooperation.

‘The DZG basic dataset represents an important step towards more effective and interconnected health research. By standardising data across disease boundaries, we enable researchers to discover new correlations and better understand the mechanisms of action of diseases. This not only improves the quality of the data, but also creates a solid basis for innovative, joint research projects,’ says Prof. Martin Martin Hrabě de Angelis, Director of the German Centre for Diabetes Research and current spokesperson for the German Centres for Health Research.

The first version of the basic dataset was published in 2022 and has been mandatory in all DZG-funded studies since 2024. It can be viewed by the interested research community in the MDM-Portal.

Contact:

Spokesperson AG Research-IT

Jori Kern, German Consortium for Translational Cancer Research

Dr. Raphael Majeed, German Center for Lung Research

Website of the Research IT Working Group