Clinical Cancer Registries - Are They Up for Health Services Research?

Stud Health Technol Inform. 2016:228:242-6.

Abstract

Clinical cancer registries are a valuable data source for health services research (HSR). HSR is in need of high quality routine care data for its evaluations. However, the secondary use of routine data - such as documented cancer cases in a disease registry - poses new challenges in terms of data quality, IT-management, documentation processes and data privacy. In the clinical cancer registry Heilbronn-Franken, real-world data from the Giessen Tumor Documentation System (GTDS) was utilized for analyses of patients' disease processes and guideline adherence in follow-up care. A process was developed to map disease state definitions to fields of the GTDS database and extract patients' disease progress information. Thus, the disease process of sub-cohorts could be compared to each other, e.g., comparison of disease free survival of HER2 (human epidermal growth factor receptor 2)-positive and -negative women who were treated with Trastuzumab, a targeted therapy applied in breast cancer. In principle, such comparisons are feasible and of great value for HSR as they depict a routine care setting of a diverse patient cohort. Yet, local documentation practice, missing flow of information from external health care providers or small sub-cohorts impede the analyses of clinical cancer registries data bases and usage for HSR.

MeSH terms

  • Breast Neoplasms / mortality
  • Breast Neoplasms / pathology
  • Breast Neoplasms / therapy
  • Data Accuracy*
  • Disease-Free Survival
  • Female
  • Health Services Research* / methods
  • Health Services Research* / standards
  • Humans
  • Medical Oncology / methods
  • Medical Oncology / standards*
  • Receptor, ErbB-2 / blood
  • Registries / standards*
  • Trastuzumab / therapeutic use
  • Treatment Outcome

Substances

  • ERBB2 protein, human
  • Receptor, ErbB-2
  • Trastuzumab