{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,2,21]],"date-time":"2025-02-21T18:40:36Z","timestamp":1740163236644,"version":"3.37.3"},"reference-count":0,"publisher":"IOS Press","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2016]]},"abstract":"<jats:p>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 &amp;ndash; such as documented cancer cases in a disease registry &amp;ndash; 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.<\/jats:p>","DOI":"10.3233\/978-1-61499-678-1-242","type":"book-chapter","created":{"date-parts":[[2025,2,21]],"date-time":"2025-02-21T17:13:02Z","timestamp":1740157982000},"source":"Crossref","is-referenced-by-count":0,"title":["Clinical Cancer Registries &amp;ndash; Are They Up for Health Services Research?"],"prefix":"10.3233","author":[{"family":"Pobiruchin Monika","sequence":"additional","affiliation":[]},{"family":"Bochum Sylvia","sequence":"additional","affiliation":[]},{"family":"Martens Uwe M.","sequence":"additional","affiliation":[]},{"family":"Schramm Wendelin","sequence":"additional","affiliation":[]}],"member":"7437","container-title":["Studies in Health Technology and Informatics","Exploring Complexity in Health: An Interdisciplinary Systems Approach"],"original-title":[],"deposited":{"date-parts":[[2025,2,21]],"date-time":"2025-02-21T18:06:28Z","timestamp":1740161188000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.medra.org\/servlet\/aliasResolver?alias=iospressISBN&isbn=978-1-61499-677-4&spage=242&doi=10.3233\/978-1-61499-678-1-242"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2016]]},"references-count":0,"URL":"https:\/\/doi.org\/10.3233\/978-1-61499-678-1-242","relation":{},"ISSN":["0926-9630"],"issn-type":[{"value":"0926-9630","type":"print"}],"subject":[],"published":{"date-parts":[[2016]]}}}