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Registers for Networked Medical Research in Germany: Situation and prospects
J Stausberg1, U Altmann, G Antony
1Institut für Medizinische Informationsverarbeitung, Biometrie und Epidemiologie (IBE), Ludwig-Maximilians-Universität München , Germany.
Applied Clinical Informatics
|April 26, 2013
Summary
Disease-specific registers in Germany, operated by the TMF (Technology, Methods, and Infrastructure for Networked Medical Research), are crucial for clinical research. A survey revealed significant heterogeneity in their organization and technology, necessitating best practice recommendations.
Area of Science:
- Medical Informatics
- Health Services Research
- Clinical Research Infrastructure
Background:
- Disease-specific registers are managed by TMF (Technology, Methods, and Infrastructure for Networked Medical Research) member networks in Germany.
- These registers support clinical research by generating hypotheses, identifying patients, and facilitating clinical trials.
Purpose of the Study:
- To assess the coverage, status, and challenges of TMF-operated registers.
- To identify register requirements and propose best practice models for their management.
Main Methods:
- A survey questionnaire was distributed to all 55 TMF member networks.
- Interviews were conducted with 10 selected registers to explore technological aspects.
Main Results:
- 11 TMF networks reported on 14 registers; six focused on circulatory diseases with over 150,000 patients.
- Significant heterogeneity was observed in technical solutions and organizational structures.
- A five-level management model was identified as a best practice for efficient register operation.
Conclusions:
- TMF networks have established disease-specific registers primarily for clinical research support.
- Organizational and technical variations, along with planning gaps, highlight the need for standardized recommendations.
- The TMF is committed to ongoing support for improving register quality.
