In:
Das Gesundheitswesen, Georg Thieme Verlag KG, Vol. 85, No. S 03 ( 2023-09), p. S226-S234
Abstract:
Introduction Translational research is important, especially in medicine
where decisions affect people’s lives. Clinical registries and the studies embedded in them allow the depiction of actual care practice under
routine conditions. Translating the fi ndings of health services research back
into clinical research through prospective cohort studies has the potential to drive medical innovations faster, more effectively and, above all, in a more
targeted manner. These must therefore be a central component of cutting-edge oncological research. Objective The aim of the registry is the establishment of clinical
cohorts and the provision of a comprehensive, high-quality data set for oncological diseases. Methods/Design The registry will prospectively record all
patients treated for cancer at Dresden University Hospital (UKD). In addition to the data from the hospital information systems (ORBIS, TDS, GEPADO, etc.),
monitoring of health-related quality of life (HRQOL) is to be carried out at regular intervals at the beginning and during the course of treatment. In
addition, individual linkage with data from clinical cancer registries and health insurance companies (including AOK PLUS) is planned for a period of five
years before and after inclusion. All these data will be merged in a registry database. The selection of variables and measurement time points is closely
based on the guidelines for colorectal carcinoma of the international initiative ICHOM (International Consortium for Health Outcomes Measurement). The study
management software (STeVe) separates personal identification characteristics (IDAT) and medical data (MDAT) at an early stage. The independent trust centre
of the TU Dresden (Treuhandstelle) ensures that no personal data enter the registry database. It is thereby also ensured that the data owners involved
(UKD, biobank, health insurance company, cancer registry, patient) only receive the personal data they need for allocation. The MOSAIC software tools
recommended by the TMF (Technologie- und Methodenplattform für die vernetzte medizinische Forschung e.V.) are used to manage the pseudonyms. Discussion/Conclusion With the registry, previously missing
evidence on the effectiveness, safety and costs of diagnostic and therapeutic measures can be made, taking into account long-term and patient-reported
outcomes of routine care. The data potentially allow for the identification of barriers to and facilitators of innovative promising cancer diagnostics and
therapies. They also enable generation of scientifically relevant hypotheses in the field of translational and outcomes research.
Type of Medium:
Online Resource
ISSN:
0941-3790
,
1439-4421
Language:
English
Publisher:
Georg Thieme Verlag KG
Publication Date:
2023
detail.hit.zdb_id:
1101426-X
SSG:
20,1
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