NUM Clinical Epidemiology and Study Platform (NUKLEUS) Data Collection and Processing Unit for External Data (DAAeD)

Project duration

01.07.2025 – 30.06.2030

Project Content

NUKLEUS (NUM Clinical Epidemiology and Study Platform) is a nationwide research infrastructure within the Network of University Medicine (Netzwerk Universitätsmedizin, NUM), built by researchers, for researchers. It connects a broad network of physicians and scientists across German university hospitals, private clinics, and medical practices, thereby fostering interdisciplinary collaboration and exchange across different care levels. Its central aim is to enable high-quality multicenter clinical and epidemiological studies. To this end, NUKLEUS provides researchers with access to established infrastructures for high-quality data and biospecimens, alongside expert guidance on the planning, execution, and analysis of studies.

To further strengthen this infrastructure, the Data Collection and Processing Unit for External Data (DAAeD) is being established as a dedicated component of NUKLEUS. Its primary focus lies on the integration of pseudonymized claims data from statutory health insurance (SHI) providers. Data from statutory health and long-term care insurance (GKV/SPV) offer significant potential for medical research and health care, as they reflect large population-based case numbers over extended periods of time. It also provides standardized, cross-sector billing information, primarily regarding prescription drugs, diagnoses, and services in outpatient and inpatient health care, the provision of medical devices and assistive devices, documentation of periods of incapacity for work, and long-term care insurance data, making it a valuable source for health-related analyses and health services research. 

In addition, the infrastructure established within NUKLEUS enables the linkage of claims data with clinical routine data and study-specific data. The structured integration of external healthcare-related data expands the research potential of NUKLEUS. The integration and linkage of claims data with clinical routine data from Data Integration Centers (DICs) and study-specific data provide substantial added value for health research.

Only through person-level, yet pseudonymized, linkage of claims data with clinical and other research data can patient-centered research questions be addressed reliably, for example regarding the effectiveness of therapies in routine care, the long-term progression of chronic diseases, or disparities in healthcare provision. Such linkages provide a more comprehensive view of disease trajectories and treatment outcomes (over-treatment, under-treatment, and inappropriate care), that would not be possible from any single data source alone. In this way, they support the evidence-based further development of the healthcare system and strengthen health services research at a national level.

The Role of Dresden University Medicine

The Data Collection and Management Center for External Data (DAAeD) is being established and will be operated at the Center for Medical Informatics (ZMI) at University Hospital Carl Gustav Carus Dresden within the NUKLEUS infrastructure. Its purpose is to make external healthcare-related data usable for research at scale and with high quality, based on patients’ informed consent. 

Its role includes:

• receiving claims data from health insurers,
• requesting missing or incomplete information where needed,
• harmonizing, plausibility-checking, and standardizing incoming data,
• generating research-relevant indicators,
• storing processed data for onward transfer,
• and transferring processed data to the central NUM NUKLEUS repository for later linkage and research use.

More information on the conceptual framework is available at: https://pubmed.ncbi.nlm.nih.gov/39389575/

For more information on the NUKLEUS project visit: https://www.netzwerk-universitaetsmedizin.de/plattformen/nukleus

Ansprechpartnerinnen

Funding

Funded by the German Federal Ministry of Research, Technology and Space (BMFTR) within the framework of the Network of University Medicine 3.0 (NUM 3.0). 

Funding reference number: 01KX2425