Christof Iking-Konert1, Pia Wallmeier2, Sabrina Arnold3, Sabine Adler4, Kirsten de Groot5, Bernhard Hellmich6, Bimba F Hoyer7, Konstanze Holl-Ulrich8, Gabriele Ihorst9, Margit Kaufmann9, Ina Kötter10, Ulf Müller-Ladner11, T Magnus12, Jürgen Rech13, Fabian Schubach9, Hendrik Schulze-Koops14, Nils Venhoff15, Thorsten Wiech16, Peter Villiger17, Peter Lamprecht3. 1. Sektion Rheumatologie, III Med. Klinik, Universitätsklinikum Hamburg Eppendorf, Hamburg, Germany. c.iking-konert@uke.de. 2. Sektion Rheumatologie, III Med. Klinik, Universitätsklinikum Hamburg Eppendorf, Hamburg, Germany. 3. Department of Rheumatology and Clinical Immunology, University of Lübeck, Lübeck, Germany. 4. SimZentrum Erfurt, Erfurt, Germany. 5. Med Klinik III, Innere Medizin, Rheumatologie, Nephrologie, Sana Klinikum Offenbach/Main, Offenbach, Germany. 6. Klinik für Innere Medizin, Rheumatologie und Immunologie medius KLINIK Kirchheim, Kirchheim, Germany. 7. Rheumatologie/klinische Immunologie und Exzellenzzentrum Entzündungsmedizin, Klinik für Innere Medizin I, UKSH Campus Kiel, Kiel, Germany. 8. Pathologie Hamburg, Labor Lademannbogen MVZ GmbH, Hamburg, Germany. 9. Clinical Trials Unit, Faculty of Medicine, Medical Center - University of Freiburg, University of Freiburg, Freiburg, Germany. 10. Sektion Rheumatologie, III Med. Klinik, Universitätsklinikum Hamburg Eppendorf und Klinikum Bad Bramstedt, Bad Bramstedt, Germany. 11. Abt. Rheumatologie und Klinische Immunologie, JLU Giessen, Campus Kerckhoff, Giessen, Germany. 12. Neurologische Klinik, Universitätsklinikum Hamburg Eppendorf, Hamburg, Germany. 13. Uni-Klinikum Erlangen, Department of Internal Medicine 3 - Rheumatology and Immunology, Friedrich-Alexander University (FAU) Erlangen-Nürnberg and Universitätsklinikum Erlangen, Erlangen, Germany. 14. Division of Rheumatology and Clinical Immunology, Department of Internal Medicine IV, Ludwig-Maximilians-University Munich, Munich, Germany. 15. Department of Rheumatology and Clinical Immunology, Faculty of Medicine, Medical Center - University of Freiburg, University of Freiburg, Freiburg, Germany. 16. Sektion Nephropathologie, Institut für Pathologie, Universitätsklinikum Hamburg-Eppendorf, Hamburg, Germany. 17. University Hospital and University of Bern, Bern, Switzerland.
Abstract
BACKGROUND: Vasculitides comprise a group of rare diseases which affect less than 5 in 10.000 individuals. Most types of vasculitis can become organ- and life-threatening and are characterized by chronicity, high morbidity and relapses, altogether resulting in significant morbidity and mortality. Previous studies have been either monocentric or mainly retrospective - studies with a prospective design mostly consisted of rather small cohorts of 100 to 200 patients. The aim of the Joint Vasculitis Registry in German-speaking countries (GeVas) is to record all patients who have been recently diagnosed with vasculitis or who have changed their treatment due to a relapse (inception cohort). In GeVas, data are collected prospectively in a multicenter design in Germany, Austria and Switzerland. By this approach, courses of vasculitis and their outcomes can be monitored over an extended period. METHODS: GeVas is a prospective, web-based, multicenter, clinician-driven registry for the documentation of organ manifestations, damage, long-term progress and other outcomes of various types of vasculitis. The registry started recruiting in June 2019. As of October 2020, 14 centers have been initiated and started recruiting patients in Germany. Involvement of sites in Austria and the German-speaking counties of Switzerland is scheduled in the near future. DISCUSSION: In June 2019, we successfully established a prospective multicenter vasculitis registry being the first of its kind in German-speaking countries. The participating centers are currently recruiting, and systematic analysis of long-term vasculitis outcomes is expected in the ensuing period. TRIAL REGISTRATION: German Clinical Trials Register (Deutsches Register Klinischer Studien): DRKS00011866 . Registered 10 May 2019.
BACKGROUND: Vasculitides comprise a group of rare diseases which affect less than 5 in 10.000 individuals. Most types of vasculitis can become organ- and life-threatening and are characterized by chronicity, high morbidity and relapses, altogether resulting in significant morbidity and mortality. Previous studies have been either monocentric or mainly retrospective - studies with a prospective design mostly consisted of rather small cohorts of 100 to 200 patients. The aim of the Joint Vasculitis Registry in German-speaking countries (GeVas) is to record all patients who have been recently diagnosed with vasculitis or who have changed their treatment due to a relapse (inception cohort). In GeVas, data are collected prospectively in a multicenter design in Germany, Austria and Switzerland. By this approach, courses of vasculitis and their outcomes can be monitored over an extended period. METHODS: GeVas is a prospective, web-based, multicenter, clinician-driven registry for the documentation of organ manifestations, damage, long-term progress and other outcomes of various types of vasculitis. The registry started recruiting in June 2019. As of October 2020, 14 centers have been initiated and started recruiting patients in Germany. Involvement of sites in Austria and the German-speaking counties of Switzerland is scheduled in the near future. DISCUSSION: In June 2019, we successfully established a prospective multicenter vasculitis registry being the first of its kind in German-speaking countries. The participating centers are currently recruiting, and systematic analysis of long-term vasculitis outcomes is expected in the ensuing period. TRIAL REGISTRATION: German Clinical Trials Register (Deutsches Register Klinischer Studien): DRKS00011866 . Registered 10 May 2019.
Authors: Jan H Schirmer; Marvin N Wright; Reinhard Vonthein; Kristine Herrmann; Bernhard Nölle; Marcus Both; Frank O Henes; Andreas Arlt; Wolfgang L Gross; Susanne Schinke; Eva Reinhold-Keller; Frank Moosig; Julia U Holle Journal: Rheumatology (Oxford) Date: 2015-08-20 Impact factor: 7.580
Authors: Mikkel Faurschou; Kerstin Westman; Niels Rasmussen; Kirsten de Groot; Oliver Flossmann; Peter Höglund; David R W Jayne Journal: Arthritis Rheum Date: 2012-10
Authors: Julia U Holle; Wolfgang L Gross; Ute Latza; Bernhard Nölle; Petra Ambrosch; Martin Heller; Regina Fertmann; Eva Reinhold-Keller Journal: Arthritis Rheum Date: 2011-01
Authors: Lorraine Harper; Matthew D Morgan; Michael Walsh; Peter Hoglund; Kerstin Westman; Oliver Flossmann; Vladimir Tesar; Phillipe Vanhille; Kirsten de Groot; Raashid Luqmani; Luis Felipe Flores-Suarez; Richard Watts; Charles Pusey; Annette Bruchfeld; Niels Rasmussen; Daniel Blockmans; Caroline O Savage; David Jayne Journal: Ann Rheum Dis Date: 2011-11-29 Impact factor: 19.103
Authors: Oliver Flossmann; Annelies Berden; Kirsten de Groot; Chris Hagen; Lorraine Harper; Caroline Heijl; Peter Höglund; David Jayne; Raashid Luqmani; Alfred Mahr; Chetan Mukhtyar; Charles Pusey; Niels Rasmussen; Coen Stegeman; Michael Walsh; Kerstin Westman Journal: Ann Rheum Dis Date: 2010-11-24 Impact factor: 19.103
Authors: Michael Walsh; Alina Casian; Oliver Flossmann; Kerstin Westman; Peter Höglund; Charles Pusey; David R W Jayne Journal: Kidney Int Date: 2013-04-24 Impact factor: 10.612
Authors: Ana García-Martínez; Pedro Arguis; Sergio Prieto-González; Georgina Espígol-Frigolé; Marco A Alba; Montserrat Butjosa; Itziar Tavera-Bahillo; José Hernández-Rodríguez; Maria C Cid Journal: Ann Rheum Dis Date: 2013-07-19 Impact factor: 19.103
Authors: Alfred D Mahr; Juan A Jover; Robert F Spiera; César Hernández-García; Benjamin Fernández-Gutiérrez; Michael P Lavalley; Peter A Merkel Journal: Arthritis Rheum Date: 2007-08
Authors: G S Hoffman; G S Kerr; R Y Leavitt; C W Hallahan; R S Lebovics; W D Travis; M Rottem; A S Fauci Journal: Ann Intern Med Date: 1992-03-15 Impact factor: 25.391