{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,10]],"date-time":"2026-01-10T02:14:10Z","timestamp":1768011250814,"version":"3.49.0"},"reference-count":13,"publisher":"Georg Thieme Verlag KG","issue":"S 01","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Gesundheitswesen"],"published-print":{"date-parts":[[2021,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>\n          Ziel der Studie In Deutschland unterscheiden sich die Behandlungspfade von frisch Querschnittgel\u00e4hmten in Abh\u00e4ngigkeit von intrinsisch-krankheitsspezifischen und extrinsischen Faktoren erheblich. Welche dieser Faktoren mit einem verbesserten Outcome, weniger Folgekomplikationen und station\u00e4ren Wiederaufnahmen assoziiert sind, ist bis heute nicht bekannt. Daher soll das deutschlandweite, patientenzentrierte, webbasierte ParaReg-Register implementiert werden, um langfristig eine bessere Qualit\u00e4t der Patientenversorgung, Planung der Behandlungspfade und Kosteneffizienz zu erreichen.<\/jats:p><jats:p>\n          Methodik In der Konzeptionierungsphase 2017\/18 wurde das Datenmodell des Registers vom ParaReg-Leitungskomitee in einem iterativen Prozess zusammen mit dem erweiterten Vorstand der Deutschsprachigen Medizinischen Gesellschaft f\u00fcr Paraplegiologie e.V. (DMGP) und Patientenvertretern entwickelt. In ParaReg werden soziale und medizinische Routinedaten zusammen mit international etablierten neurologischen, funktionellen und partizipationsbezogenen Scores dokumentiert. Die Vergabe einer eindeutigen Patienten-ID erlaubt lebenslang eine zentrums\u00fcbergreifende Dokumentation von station\u00e4ren Aufenthalten in einem der 27 in Deutschland in der DMGP organisierten Querschnittzentren. Das ParaReg-Datenschutzkonzept und die Patienteninformation\/-einwilligung orientieren sich an den um DSGVO-relevante Aspekte erweiterten Vorlagen des Open Source Registers f\u00fcr seltene Erkrankungen (OSSE).<\/jats:p><jats:p>\n          Ergebnisse In der 2019 begonnenen Realisierungsphase wurde die informationstechnische Infrastruktur gem\u00e4\u00df des klinischen ID-Management-Moduls der Technologie- und Methodenplattform f\u00fcr die vernetzte medizinische Forschung e.V. (TMF) umgesetzt. Parallel wurden die rechtlich-ethischen Voraussetzungen f\u00fcr den Registerbetrieb unter der Schirmherrschaft der DMGP geschaffen. In das Datenschutzkonzept sind die Empfehlungen der Arbeitsgruppe Datenschutz der TMF eingeflossen. Basierend auf den R\u00fcckmeldungen aus der Alpha-Testphase mit Eingabe der Aufenthaltsdaten von 40 Patienten wurde die Ergonomie der elektronischen Eingabeformulare speziell f\u00fcr mobile Eingabeger\u00e4te verbessert.<\/jats:p><jats:p>\n          Schlussfolgerung Mit Abschluss der monozentrischen Alpha-Testphase hat die multizentrische Datenerhebung an 5 DMGP-Querschnittzentren begonnen. Die Nachhaltigkeit von ParaReg ist durch die strukturelle und finanzielle Unterst\u00fctzung durch die DMGP auch nach Auslaufen der F\u00f6rderung durch das Bundesministerium f\u00fcr Bildung und Forschung (BMBF) gesichert.<\/jats:p>","DOI":"10.1055\/a-1538-6537","type":"journal-article","created":{"date-parts":[[2021,11,3]],"date-time":"2021-11-03T23:48:50Z","timestamp":1635983330000},"page":"S18-S26","source":"Crossref","is-referenced-by-count":6,"special_numbering":"S","title":["Das deutschlandweite, webbasierte ParaReg-Register zur lebenslangen Dokumentation von Querschnittgel\u00e4hmten \u2013 Datenmodell, rechtlich-ethische Voraussetzungen und technische Implementierung"],"prefix":"10.1055","volume":"83","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3873-1023","authenticated-orcid":false,"given":"R\u00fcdiger","family":"Rupp","sequence":"additional","affiliation":[{"name":"Klinik f\u00fcr Paraplegiologie, Universit\u00e4tsklinikum Heidelberg, Heidelberg, 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Universit\u00e4tsklinikum Heidelberg, Heidelberg, Deutschland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Petra","family":"Knaup-Gregori","sequence":"additional","affiliation":[{"name":"Institut f\u00fcr Medizinische Informatik, Universit\u00e4tsklinikum Heidelberg, Heidelberg, Deutschland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mirko","family":"Aach","sequence":"additional","affiliation":[{"name":"Abteilung f\u00fcr R\u00fcckenmarksverletzte, Berufsgenossenschaftliches Universitatsklinikum Bergmannsheil, Bochum, Deutschland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Andreas","family":"Badke","sequence":"additional","affiliation":[{"name":"Abteilung f\u00fcr Querschnittgel\u00e4hmte, Berufsgenossenschaftliche Klinik T\u00fcbingen, T\u00fcbingen, Deutschland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Andreas","family":"Hildesheim","sequence":"additional","affiliation":[{"name":"Querschnittzentrum, Neurologisches Rehabilitationszentrum Godesh\u00f6he e.\u2009V., Bonn, Deutschland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Doris","family":"Maier","sequence":"additional","affiliation":[{"name":"Zentrum f\u00fcr R\u00fcckenmarkverletzte, Berufsgenossenschaftliche Unfallklinik Murnau, Murnau, Deutschland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Norbert","family":"Weidner","sequence":"additional","affiliation":[{"name":"Klinik f\u00fcr Paraplegiologie, Universit\u00e4tsklinikum Heidelberg, Heidelberg, Deutschland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marion","family":"Saur","sequence":"additional","affiliation":[{"name":"Zentrum f\u00fcr Tetra-\/Paraplegie, Orthop\u00e4dische Klinik Hessisch Lichtenau, Hessisch Lichtenau, 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