Lübbeke Anne, Hoogervorst Lotje A, Marang-van de Mheen Perla J, Prentice Heather A, Rolfson Ola, Nelissen Rob G H H, Steinbrück Arnd, McGauran Gearoid, Barea Christophe, Erikson Kajsa, Pedersen Alma B, Porter Martyn
Division of Orthopaedics and Trauma Surgery, Geneva University Hospitals and University of Geneva, Switzerland; Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, UK.
Department of Orthopaedics, Leiden University Medical Center, The Netherlands.
Acta Orthop. 2025 Jan 24;96:116-126. doi: 10.2340/17453674.2024.42706.
The amount of information publicly available from arthroplasty registries is large but could be used more effectively. This project aims to improve the knowledge concerning existing registries to facilitate access, transparency, harmonization, and reporting.
Within the International Society of Arthroplasty Registries (ISAR) we aimed at developing, testing, adopting, and making publicly available a short, standardized registry description with items considered relevant for stakeholders using a cross-sectional study survey. Items were chosen based on a literature review and expert advice, selected by 9 ISAR working group members, tested iteratively in 3 registries, and commented upon by 4 external experts. All 29 ISAR member registries as of July 2023 were invited to participate in the project.
Included items covered general descriptive information regarding registries, information related to governance, outcomes, data quality, data access, and registry production. The template was adopted, completed, and made publicly available by 25 of the 29 registries. Of those, 2/3 were national registries. 23 captured both hip and knee arthroplasties and 10 captured shoulder arthroplasties. Most registries had public reporting of data quality, methods, and results. Data was accessible in all but 2 registries, mainly as aggregated data. Important items relevant to registry quality for researchers to consistently indicate in scientific papers include scope, inclusion criteria, outcomes definitions, coverage/completeness, and validation processes.
This ISAR initiative implemented a short, standardized description to facilitate appropriate use of orthopedic registry data worldwide relevant for a diverse group of stakeholders including researchers, industry, public health and regulatory agencies.
关节置换登记处公开的信息量很大,但可以得到更有效的利用。本项目旨在增进对现有登记处的了解,以促进信息获取、透明度、协调和报告。
在国际关节置换登记协会(ISAR)内部,我们旨在通过横断面研究调查,开发、测试、采用并公开一份简短的标准化登记处描述,其中包含对利益相关者而言相关的项目。项目基于文献综述和专家建议选择项目,由9名ISAR工作组成员挑选,在3个登记处进行反复测试,并由4名外部专家进行评论。邀请了截至2023年7月的所有29个ISAR成员登记处参与该项目。
纳入的项目涵盖了登记处的一般描述性信息、与治理、结果、数据质量、数据获取和登记处产出相关的信息。29个登记处中有25个采用、完成并公开了该模板。其中,三分之二是国家登记处。23个登记处记录了髋关节和膝关节置换手术,10个登记处记录了肩关节置换手术。大多数登记处公开报告了数据质量、方法和结果。除2个登记处外,所有登记处的数据均可获取,主要是汇总数据。研究人员在科学论文中一致表明的与登记处质量相关的重要项目包括范围、纳入标准、结果定义、覆盖范围/完整性和验证过程。
ISAR的这一举措实施了一份简短的标准化描述,以促进全球范围内骨科登记数据的适当使用,这些数据与包括研究人员、行业、公共卫生和监管机构在内的不同利益相关者群体相关。