Clinical cancer registry data, while comprehensive, are not yet the primary source for application-related data collection, as outlined in a recent article in “Die Onkologie.” This issue pertains particularly to assessing the additional benefits of new drugs, especially those targeting rare diseases. To bolster the evidence base, the Federal Joint Committee (G-BA) has mandated data collection during drug use (AbD) since 2019, with the Institute for Quality and Efficiency in Health Care (IQWiG) playing a pivotal role in evaluating the feasibility of disease-specific registers as data sources.
Of the nine AbD procedures initiated, three were oncology-related, with IQWiG identifying disease-specific registries as suitable data sources. However, the clinical cancer registry data were not considered primary data sources due to inherent limitations, as highlighted in the article titled “Data Collection on Medicines – A Perspective for Cancer Registries.”
Clinical Cancer Registry Data for Enhanced Oncological Data Collection and Research Expertise
Clinical cancer registry data, due to their comprehensiveness, could theoretically serve as ideal data sources for AbD and addressing pertinent oncological care questions. IQWiG authors Volker Vervölgyi and Thomas Kaiser emphasize the potential of clinical cancer registry data for AbD and underscore the measures required to harness their potential fully. They advocate for improved data linkage options, enhanced data quality across borders, and the development of robust research expertise in Germany.
To enhance data quality within cancer registry data while minimizing additional burdens, the authors propose streamlining the reporting process to registries through existing IT systems in medical facilities, such as practices and hospitals. This approach could reduce the duplication of efforts and promote efficiency. Moreover, imposing stricter requirements on practice software and hospital information systems could be instrumental in this regard.
Expanding data access on specific oncological diseases, the IQWiG authors recommend facilitating simple data links between clinical cancer registries and other oncological disease registries, possibly even integrating high-quality data sources like death registers.
Enhancing Frameworks for High-Quality Clinical Research and Register-Based Studies in Germany
To further facilitate register-based research and the comparison of therapy effects in Germany, the authors emphasize the need to enhance the framework for high-quality clinical research. They suggest centralizing templates for study protocols and statistical analysis plans, enabling pilot projects to identify and address vulnerabilities, and supporting research projects that focus on relevant questions and register-based studies.
In conclusion, the article highlights the potential of clinical cancer registries as valuable sources of healthcare data but emphasizes the necessity of overcoming existing limitations and enhancing research infrastructure to fully leverage their benefits for improving patient care and healthcare decision-making.
Resource: IQWİG, January 22, 2024
This article has been prepared with the assistance of AI and reviewed by an editor. For more details, please refer to our Terms and Conditions. We do not accept any responsibility or liability for the accuracy, content, images, videos, licenses, completeness, legality, or reliability of the information contained in this article. If you have any complaints or copyright issues related to this article, kindly contact the author.
