title: Clinical Cancer Registries - Are They Up for Health Services Research?
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.
authors: GECKO Institute, Heilbronn University, Heilbronn, Germany.
authors: Monika
authors: M
authors: Pobiruchin
authors: Cancer Center Heilbronn-Franken, SLK Kliniken Heilbronn GmbH, Heilbronn, Germany.
authors: Sylvia
authors: S
authors: Bochum
authors: Cancer Center Heilbronn-Franken, SLK Kliniken Heilbronn GmbH, Heilbronn, Germany.
authors: Uwe M
authors: UM
authors: Martens
authors: GECKO Institute, Heilbronn University, Heilbronn, Germany.
authors: Wendelin
authors: W
authors: Schramm
mesh_terms: D001943:Breast Neoplasms / Q000401:mortality / Q000473:pathology / Q000628:therapy; D000068598:Data Accuracy; D018572:Disease-Free Survival; D005260:Female; D006302:Health Services Research / Q000379:methods / Q000592:standards; D006801:Humans; D008495:Medical Oncology / Q000379:methods / Q000592:standards*; D018719:Erb-b2 Receptor Tyrosine Kinases / Q000097:blood; D012042:Registries / Q000592:standards*; D000068878:Trastuzumab / Q000627:therapeutic use; D016896:Treatment Outcome
chemical_list: D018719:Erb-b2 Receptor Tyrosine Kinases; D000068878:Trastuzumab; C508053:ERBB2 protein, human