The EuroMyositis registry: an international collaborative tool to facilitate myositis research

Lilleker James B.; Vencovsky Jiri; Wang Guochun; Wedderburn Lucy R.; Diederichsen Louise Pyndt; Schmidt Jens; Oakley Paula; Benveniste Olivier; Danieli Maria Giovanna; Danko Katalin; Nguyen Thi Phuong Thuy; Vazquez-Del Mercado Monica; Andersson Helena; De Paepe Boel; debleecker Jan L.; Maurer Britta; McCann Liza J.; Pipitone Nicolo; McHugh Neil; Betteridge Zoe E.; New Paul; Cooper Robert G.; Ollier William E.; Lamb Janine A.; Krogh Niels Steen; Lundberg Ingrid E.; Chinoy Hector

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The EuroMyositis registry: an international collaborative tool to facilitate myositis research

机译：Euromyositis登记处：一个促进Myositis Research的国际协作工具

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Aims The EuroMyositis Registry facilitates collaboration across the idiopathic inflammatory myopathy (IIM) research community. This inaugural report examines pooled Registry data.

机译：AIMS Euromyositis Registry促进了特发性炎症性肌病（IIM）研究界的合作。此就职报告审查了汇总的注册表数据。

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《Annals of the Rheumatic Diseases: A Journal of Clinical Rheumatology and Connective Tissue Research》 |2018年第1期|共10页
作者
Lilleker James B.; Vencovsky Jiri; Wang Guochun; Wedderburn Lucy R.; Diederichsen Louise Pyndt; Schmidt Jens; Oakley Paula; Benveniste Olivier; Danieli Maria Giovanna; Danko Katalin; Nguyen Thi Phuong Thuy; Vazquez-Del Mercado Monica; Andersson Helena; De Paepe Boel; debleecker Jan L.; Maurer Britta; McCann Liza J.; Pipitone Nicolo; McHugh Neil; Betteridge Zoe E.; New Paul; Cooper Robert G.; Ollier William E.; Lamb Janine A.; Krogh Niels Steen; Lundberg Ingrid E.; Chinoy Hector;
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作者单位

Univ Manchester Manchester Acad Hlth Sci Ctr Div Musculoskeletal &

Dermatol Sci Sch Biol Sci Ctr;

Inst Rheumatol Prague Czech Republic;

China Japan Friendship Hosp Dept Rheumatol Beijing Peoples R China;

UCL GOS Inst Child Hlth London England;

Odense Univ Hosp Dept Rheumatol Odense Denmark;

Univ Med Ctr Gottingen Dept Neurol Gottingen Germany;

Myositis UK Southampton Hants England;

UPMC Hop Pitie Salpetriere AP HP Dept Med Interne &

Immunol Clin Paris France;

Univ Politecn Marche Med Clin Dipartimento Sci Clin &

Mol Ancona Italy;

Univ Debrecen Div Immunol Debrecen Hungary;

Hanoi Med Univ Dept Rheumatol Bach Mai Hosp Hanoi Vietnam;

Univ Guadalajara Div Med Interna Guadalajara Jalisco Mexico;

Oslo Univ Hosp Dept Rheumatol Oslo Norway;

Ghent Univ Hosp Dept Neurol Ghent Belgium;

Ghent Univ Hosp Dept Neurol Ghent Belgium;

Univ Hosp Zurich Dept Rheumatol Zurich Switzerland;

Alder Hey Childrens NHS Fdn Trust Dept Rheumatol Liverpool Merseyside England;

Arcispedale S Maria Nuova IRCCS Reggio Emilia Dept Rheumatol Reggio Emilia Italy;

Royal Natl Hosp Rheumat Dis Bath Avon England;

Royal Natl Hosp Rheumat Dis Bath Avon England;

Univ Liverpool MRC ARUK Inst Ageing &

Chron Dis Liverpool Merseyside England;

Univ Liverpool MRC ARUK Inst Ageing &

Chron Dis Liverpool Merseyside England;

Univ Manchester Div Populat Hlth Hlth Serv Res &

Primary Care Manchester Acad Hlth Sci Ctr Sch;

Univ Manchester Div Populat Hlth Hlth Serv Res &

Primary Care Manchester Acad Hlth Sci Ctr Sch;

Zitelab Aps Copenhagen Denmark;

Karolinska Inst Karolinska Univ Hosp Dept Med Rheumatol Unit Stockholm Sweden;

Salford Royal NHS Fdn Trust Dept Rheumatol Manchester Acad Hlth Sci Ctr Salford Lancs England;

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正文语种 eng
中图分类免疫性疾病;
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专利

1. The EuroMyositis registry: an international collaborative tool to facilitate myositis research [J] . Lilleker James B., Vencovsky Jiri, Wang Guochun, Annals of the Rheumatic Diseases: A Journal of Clinical Rheumatology and Connective Tissue Research . 2018,第1期

机译：Euromyositis登记处：一个促进Myositis Research的国际协作工具
2. 2016 American College of Rheumatology/European League Against Rheumatism criteria for minimal, moderate, and major clinical response in adult dermatomyositis and polymyositis An International Myositis Assessment and Clinical Studies Group/Paediatric Rheumatology International Trials Organisation Collaborative Initiative [J] . Aggarwal Rohit, Rider Lisa G., Ruperto Nicolino, Annals of the Rheumatic Diseases: A Journal of Clinical Rheumatology and Connective Tissue Research . 2017,第5期

机译：2016年美国风湿病学院/欧洲联盟对成人皮肤病和多发性肌炎的最小，中等和主要临床反应的风湿病标准，一种国际肌炎评估和临床研究组/儿科风湿病学国际试验组织合作倡议
3. Real-world outcomes in pregnant imiglucerase-treated patients with Gaucher disease: Data from the global safety database and International Collaborative Gaucher Group (ICGG) Gaucher registry pregnancy sub-registry maintained by Sanofi Genzyme [J] . Raynor Lewis, Batista Julie, Carloni Laura, Molecular genetics and metabolism . 2019,第2期

机译：妊娠石竹酶治疗患者的现实世界成果：来自全球安全数据库和国际协同Gaucher集团的数据（ICGG）Gaucher注册表怀孕子注册表由Sanofi Genzyme维护
4. The Disaster-Preparedness Registry: How GVF Online Tools Can Facilitate Disaster Preparedness Development - (PPT) [C] . Steve Birnbaum Annual Pacific Telecommunications Council Conference and Exhibition . 2011

机译：备灾登记处：GVF在线工具如何促进救助和发展 - （PPT）
5. Facilitating Web Service discovery in distributed Web Service Registries. [D] . Kassim, Afiya S. 2008

机译：促进分布式Web服务注册表中的Web服务发现。
6. Extended report: The EuroMyositis registry: an international collaborative tool to facilitate myositis research [O] . James B Lilleker, Jiri Vencovsky, Guochun Wang, -1

机译：扩展报告：欧洲肌炎注册中心：促进肌炎研究的国际协作工具
7. The EuroMyositis registry:an international collaborative tool to facilitate myositis research [O] . Lilleker, James B, Vencovsky, Jiri, Wang, Guochun, 2018

机译：欧洲肌炎注册中心：促进肌炎研究的国际合作工具

The EuroMyositis registry: an international collaborative tool to facilitate myositis research

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