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The First Report of the International Cartilage Regeneration and Joint Preservation Society's Global Registry.
CARTILAGE ( IF 2.7 ) Pub Date : 2020-02-19 , DOI: 10.1177/1947603520907664
Leela C Biant 1, 2 , Caitlin W Conley 3 , Michael J McNicholas 4
Affiliation  

OBJECTIVE The International Cartilage Regeneration and Joint Preservation Society's (ICRS's) global registry, aims to be the best source of information for patients and an unbiased resource of evidence-based medicine for scientists and clinicians working to help those unfortunate enough to suffer the pain and disability associated with articular cartilage lesions. This article constitutes the scientific summary of the reports' main findings. DESIGN The article outlines the historical precedents in the development of orthopedic registries from the earliest tumor registries, then local arthroplasty databases that led ultimately to international collaborations between national arthroplasty and soft tissue registries. The ICRS global cartilage registry was designed from the outset as a GDPR (General Data Protection Regulation) compliant, multilingual, multinational cooperative system. It is a web-based user-friendly, live in 11 languages by end 2019, which can be accessed via https://cartilage.org/society/icrs-patient-registry/ . Patients and clinicians enter data by smartphone, tablet, or computer on any knee cartilage regeneration and joint preservation treatment, including the use of focal arthroplasty. Knee Injury and Osteoarthritis Outcome Score and Kujala patient-reported outcome measures are collected preoperatively, 6 months, 12 months, and annually for ten years thereafter. EQ-5D data collection will allow cost-effectiveness analysis. Strengths, weaknesses, and future plans are discussed. RESULTS Since inception the registry has 264 users across 50 countries. Major findings are presented and discussed, while the entire first ICRS global registry report is available at https://cartilage.org/society/icrs-patient-registry/registry-annual-reports/ . Conclusion. A measure of the maturity of any registry is the publication of its findings in the peer reviewed literature. With the publication of its first report, the ICRS global registry has achieved that milestone.

中文翻译:

国际软骨再生和联合保存协会全球注册的第一份报告。

目标 国际软骨再生和关节保护协会 (ICRS) 的全球注册中心旨在成为患者的最佳信息来源,并为致力于帮助那些不幸遭受疼痛和残疾的科学家和临床医生提供公正的循证医学资源与关节软骨病变有关。本文是对报告主要发现的科学总结。设计 本文概述了从最早的肿瘤登记处发展骨科登记处的历史先例,然后是当地关节成形术数据库,最终导致国家关节成形术和软组织登记处之间的国际合作。ICRS 全球软骨注册表从一开始就设计为符合 GDPR(通用数据保护条例),多语种、多国合作体系。它是基于网络的用户友好型,到 2019 年底以 11 种语言上线,可通过 https://cartilage.org/society/icrs-patient-registry/ 访问。患者和临床医生通过智能手机、平板电脑或计算机输入任何膝关节软骨再生和关节保留治疗的数据,包括使用局灶性关节成形术。膝关节损伤和骨关节炎结果评分和 Kujala 患者报告的结果测量在术前、6 个月、12 个月和之后的 10 年内每年收集。EQ-5D 数据收集将允许进行成本效益分析。讨论了优势、劣势和未来计划。结果 自成立以来,注册机构在 50 个国家/地区拥有 264 名用户。介绍和讨论了主要发现,而完整的第一份 ICRS 全球注册报告可在 https://cartilage.org/society/icrs-patient-registry/registry-annual-reports/ 获得。结论。任何注册机构成熟度的衡量标准是在同行评审的文献中发表其研究结果。随着第一份报告的发布,ICRS 全球注册机构实现了这一里程碑。
更新日期:2020-04-20
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