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@ARTICLE{Datzmann:283164,
      author       = {T. Datzmann and O. Schoffer and J. Schmitt and H. Böhme
                      and J. Fritzmann and M. Distler and U. Ubbelohde and E.
                      Giehl-Brown and T. Henke and M. Krause$^*$ and H. Glimm$^*$
                      and M. Bornhäuser and J. Weitz},
      title        = {{L}ong-{T}erm {O}bservation of {P}atients {W}ith {C}ancer -
                      an {E}ntity-{I}ndependent {R}egistry for {H}ealthcare and
                      {T}ranslational {R}esearch at the {U}niversity {M}edicine
                      {D}resden ({C}ancer-{R}eg-{VT}). [{L}angzeitbeobachtung von
                      {P}atienten mit {K}rebserkrankungen – ein
                      entitätsunabhängiges {R}egister für
                      {V}ersorgungsforschung und translationale {F}orschung an der
                      {U}niversitätsmedizin {D}resden ({C}ancer-{R}eg-{VT})].},
      journal      = {Das Gesundheitswesen},
      volume       = {85},
      number       = {S 03},
      issn         = {0941-3790},
      address      = {Stuttgart [u.a.]},
      publisher    = {Thieme},
      reportid     = {DKFZ-2023-01947},
      pages        = {S226 - S234},
      year         = {2023},
      abstract     = {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 findings 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.The aim of the registry is the
                      establishment of clinical cohorts and the provision of a
                      comprehensive, high-quality data set for oncological
                      diseases.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.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.},
      cin          = {DD01},
      ddc          = {610},
      cid          = {I:(DE-He78)DD01-20160331},
      pnm          = {899 - ohne Topic (POF4-899)},
      pid          = {G:(DE-HGF)POF4-899},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:37751759},
      doi          = {10.1055/a-2129-7651},
      url          = {https://inrepo02.dkfz.de/record/283164},
}