{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,7]],"date-time":"2026-06-07T19:30:23Z","timestamp":1780860623450,"version":"3.54.1"},"reference-count":10,"publisher":"Georg Thieme Verlag KG","issue":"S 03","license":[{"start":{"date-parts":[[2023,9,26]],"date-time":"2023-09-26T00:00:00Z","timestamp":1695686400000},"content-version":"vor","delay-in-days":25,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Gesundheitswesen"],"published-print":{"date-parts":[[2023,9]]},"abstract":"<jats:title>Zusammenfassung<\/jats:title><jats:p>\n          Einleitung Translationale Forschung ist wichtig, insbesondere in der\n                    Medizin, wo Entscheidungen das Leben von Menschen beeinflussen. Klinische\n                    Register und die darin eingebetteten Studien erm\u00f6glichen die Abbildung\n                    der tats\u00e4chlichen Versorgungspraxis unter Routinebedingungen. Die\n                    R\u00fcckf\u00fchrung der Erkenntnisse aus der Versorgungsforschung in die\n                    klinische Forschung durch prospektive Kohortenstudien hat das Potenzial,\n                    medizinische Innovationen schneller, effektiver und vor allem zielgerichteter\n                    voranzutreiben. Dies muss daher ein zentraler Bestandteil der onkologischen\n                    Spitzenforschung sein.<\/jats:p><jats:p>\n          Zielsetzung Ziel des Registers ist der Aufbau von klinischen Kohorten und\n                    die Bereitstellung eines umfassenden, qualitativ hochwertigen Datensatzes\n                    f\u00fcr onkologische Erkrankungen.<\/jats:p><jats:p>\n          Methoden\/Design Das Register wird prospektiv alle Patienten\n                    erfassen, die am Universit\u00e4tsklinikum Dresden (UKD) wegen Krebs\n                    behandelt werden. Zus\u00e4tzlich zu den Daten aus den\n                    Krankenhausinformationssystemen (ORBIS, TDS, GEPADO, etc.) soll in\n                    regelm\u00e4\u00dfigen Abst\u00e4nden zu Beginn und im Verlauf der\n                    Behandlung ein Monitoring der gesundheitsbezogenen Lebensqualit\u00e4t\n                    (HRQOL) durchgef\u00fchrt werden. Dar\u00fcber hinaus ist eine\n                    individuelle Verkn\u00fcpfung mit Daten aus klinischen Krebsregistern und\n                    Krankenkassen (u.\u2009a. AOK PLUS) f\u00fcr einen Zeitraum von\n                    f\u00fcnf Jahren vor und nach dem Einschluss geplant. Alle diese Daten werden\n                    in einer Registerdatenbank zusammengef\u00fchrt. Die Auswahl der Variablen\n                    und Messzeitpunkte orientiert sich eng an den Leitlinien f\u00fcr das\n                    kolorektale Karzinom der internationalen Initiative ICHOM (International\n                    Consortium for Health Outcomes Measurement). Die Studienmanagementsoftware\n                    (STeVe) trennt fr\u00fchzeitig pers\u00f6nliche Identifikationsmerkmale\n                    (IDAT) und medizinische Daten (MDAT). Die unabh\u00e4ngige Treuhandstelle der\n                    TU Dresden stellt sicher, dass keine personenbezogenen Daten in die\n                    Registerdatenbank gelangen. Damit ist auch sichergestellt, dass die beteiligten\n                    Dateneigent\u00fcmer (UKD, Biobank, Krankenkasse, Krebsregister, Patient) nur\n                    die personenbezogenen Daten erhalten, die sie f\u00fcr die Zuordnung\n                    ben\u00f6tigen. Zur Verwaltung der Pseudonyme werden die von der TMF\n                    (Technologie- und Methodenplattform f\u00fcr die vernetzte medizinische\n                    Forschung e.V.) empfohlenen MOSAIC-Softwaretools eingesetzt.<\/jats:p><jats:p>\n          Diskussion\/Schlussfolgerung Mit dem Register k\u00f6nnen\n                    bisher fehlende Erkenntnisse \u00fcber die Wirksamkeit, Sicherheit und Kosten\n                    von diagnostischen und therapeutischen Ma\u00dfnahmen unter\n                    Ber\u00fccksichtigung von Langzeit- und patientenberichteten Outcomes aus der\n                    Routineversorgung gewonnen werden. Die Daten erlauben potenziell die\n                    Identifizierung von Barrieren und F\u00f6rderfaktoren f\u00fcr innovative,\n                    vielversprechende Krebsdiagnostik und -therapien. Sie bieten auch die\n                    M\u00f6glichkeit, wissenschaftlich relevante Hypothesen im Bereich der\n                    Translations- und Outcome-Forschung zu generieren.<\/jats:p>","DOI":"10.1055\/a-2129-7651","type":"journal-article","created":{"date-parts":[[2023,9,26]],"date-time":"2023-09-26T22:39:29Z","timestamp":1695767969000},"page":"S226-S234","source":"Crossref","is-referenced-by-count":3,"special_numbering":"S","title":["Langzeitbeobachtung von Patienten mit Krebserkrankungen \u2013 ein\n                    entit\u00e4tsunabh\u00e4ngiges Register f\u00fcr Versorgungsforschung\n                    und translationale Forschung an der Universit\u00e4tsmedizin Dresden\n                    (Cancer-Reg-VT)"],"prefix":"10.1055","volume":"85","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0312-5901","authenticated-orcid":false,"given":"Thomas","family":"Datzmann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Olaf","family":"Schoffer","sequence":"additional","affiliation":[{"name":"Zentrum f\u00fcr Evidenzbasierte Gesundheitsversorgung (ZEGV),\n                    Medizinische Fakult\u00e4t und Universit\u00e4tsklinikum Carl Gustav\n                    Carus, TU Dresden, Dresden, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jochen","family":"Schmitt","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Heiko","family":"B\u00f6hme","sequence":"additional","affiliation":[{"name":"Nationales Centrum f\u00fcr Tumorerkrankungen Dresden\n                    (NCT\/UCC), Medizinische Fakult\u00e4t und\n                    Universit\u00e4tsklinikum Carl Gustav Carus, Technische Universit\u00e4t\n                    Dresden; Helmholtz-Zentrum Dresden-Rossendorf (HZDR), DKFZ, Dresden,\n                    Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Johannes","family":"Fritzmann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marius","family":"Distler","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ulrike","family":"Ubbelohde","sequence":"additional","affiliation":[{"name":"Nationales Centrum f\u00fcr Tumorerkrankungen Dresden\n                    (NCT\/UCC), Medizinische Fakult\u00e4t und\n                    Universit\u00e4tsklinikum Carl Gustav Carus, Technische Universit\u00e4t\n                    Dresden; Helmholtz-Zentrum Dresden-Rossendorf (HZDR), DKFZ, Dresden,\n                    Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Esther","family":"Giehl-Brown","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tjark","family":"Henke","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mechthild","family":"Krause","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hanno","family":"Glimm","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martin","family":"Bornh\u00e4user","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J\u00fcrgen","family":"Weitz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"194","published-online":{"date-parts":[[2023,9,26]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","first-page":"403","DOI":"10.1001\/jama.297.4.403","article-title":"Practice-Based 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