The Joint Vasculitis Registry in German-speaking countries (GeVas) - a prospective, multicenter registry for the follow-up of long-term outcomes in vasculitis.
The Joint Vasculitis Registry in German-speaking countries (GeVas) - a prospective, multicenter registry for the follow-up of long-term outcomes in vasculitis.
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DOI：
10.1186/s41927-021-00206-2
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发表时间：
2021-07-31
期刊：
影响因子：
2.2
通讯作者：
Lamprecht P
中科院分区：
文献类型：
--
作者：
Iking-Konert C;Wallmeier P;Arnold S;Adler S;de Groot K;Hellmich B;Hoyer BF;Holl-Ulrich K;Ihorst G;Kaufmann M;Kötter I;Müller-Ladner U;Magnus T;Rech J;Schubach F;Schulze-Koops H;Venhoff N;Wiech T;Villiger P;Lamprecht P
血管炎是一组罕见疾病，影响每 10,000 人中不到 5 人。大多数类型的血管炎可危及器官和生命，其特点是慢性、高发病率和复发，共同导致显着的发病率和死亡率。以前的研究要么是单中心的，要么主要是回顾性的——前瞻性设计的研究大多由 100 至 200 名患者组成的小队列组成。德语国家联合血管炎登记处 (GeVas) 的目的是记录所有最近被诊断患有血管炎或因复发而改变治疗的患者（初始队列）。在 GeVas 中，数据是在德国、奥地利和瑞士的多中心设计中前瞻性收集的。通过这种方法，可以长期监测血管炎的病程及其结果。 GeVas 是一个前瞻性、基于网络、多中心、临床医生驱动的登记系统，用于记录各种类型血管炎的器官表现、损伤、长期进展和其他结果。该登记处于 2019 年 6 月开始招募。截至 2020 年 10 月，德国已有 14 个中心启动并开始招募患者。奥地利和瑞士德语区的站点计划在不久的将来参与其中。 2019年6月，我们成功建立了德语国家首个前瞻性多中心血管炎登记处。参与中心目前正在招募人员，预计将在接下来的时期对长期血管炎结果进行系统分析。德国临床试验登记册（Deutsches Register Klinischer Studien）：DRKS00011866。 2019 年 5 月 10 日注册。
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. 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. 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. German Clinical Trials Register (Deutsches Register Klinischer Studien): DRKS00011866. Registered 10 May 2019.
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影响因子：
27.4
作者：
Harper, Lorraine;Morgan, Matthew D.;Jayne, David
通讯作者：
Jayne, David
影响因子：
27.4
作者：
Flossmann, Oliver;Berden, Annelies;Westman, Kerstin
通讯作者：
Westman, Kerstin
影响因子：
--
作者：
Holle, Julia U.;Gross, Wolfgang L.;Reinhold-Keller, Eva
通讯作者：
Reinhold-Keller, Eva
影响因子：
6
作者：
Bajema IM;Bruijn JA;Casian A;Cid MC;Csernok E;van Daalen E;Harper L;Hauser T;Little MA;Luqmani RA;Mahr A;Ponte C;Salama A;Segelmark M;Suzuki K;Sznajd J;Teng YKO;Vaglio A;Westman K;Jayne D
通讯作者：
Jayne D
影响因子：
27.4
作者：
Hellmich, Bernhard;Flossmann, Oliver;Luqmani, Raashid A.
通讯作者：
Luqmani, Raashid A.