Trauma and Orthopaedic Surgery, University of Salford, Manchester, UK.
Department of Trauma and Orthopaedic Surgery, University of Manchester, Manchester University Hospitals NHS Foundation Trust, Manchester, UK.
Cartilage. 2021 Dec;13(1_suppl):74S-81S. doi: 10.1177/1947603520907664. Epub 2020 Feb 19.
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.
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.
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/. . 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.
国际软骨修复与关节保 健学会（ICRS）的全球注册系统旨在成为患者信息的最佳来源，也是为致力于帮助那些不幸遭受关节软骨损伤相关疼痛和残疾的科学家和临床医生提供基于证据的医学的公正资源。本文构成了报告主要发现的科学摘要。
本文概述了从最早的肿瘤登记处到最终导致国际关节置换和软组织登记处之间的国家间合作的骨科登记处发展的历史先例。ICRS 全球软骨注册系统从一开始就被设计为符合 GDPR（通用数据保护条例）的、多语言的、多国合作系统。它是一个基于网络的用户友好型系统，到 2019 年底将有 11 种语言实时在线，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 健治疗的数据，包括使用焦点关节成形术。在术前、6 个月、12 个月和此后 10 年内每年收集膝关节损伤和骨关节炎结局评分（KOOS）和 Kujala 患者报告结局测量。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。
自成立以来，该注册系统在 50 个国家拥有 264 名用户。主要发现已提出并讨论，而整个第一份 ICRS 全球注册报告可在 https://cartilage.org/society/icrs-patient-registry/registry-annual-reports/ 查阅。任何注册系统的成熟度的衡量标准是其在同行评审文献中的研究结果的发表。随着第一份报告的发表，ICRS 全球注册系统已经达到了这一里程碑。
