Arthroplasty registries at a glance: an initiative of the International Society of Arthroplasty Registries (ISAR) to facilitate access, understanding, and reporting of registry data from an international perspective

Background and purpose: 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. Methods: Within...

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Main Authors: Anne Lübbeke, Lotje A Hoogervorst, Perla J Marang-van de Mheen, Heather A Prentice, Ola Rolfson, Rob G H H Nelissen, Arnd Steinbrück, Gearoid McGauran, Christophe Barea, Kajsa Erikson, Alma B Pedersen, Martyn Porter
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Language:English
Published: Medical Journals Sweden 2025-01-01
Series:Acta Orthopaedica
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Online Access:https://actaorthop.org/actao/article/view/42706
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author Anne Lübbeke
Lotje A Hoogervorst
Perla J Marang-van de Mheen
Heather A Prentice
Ola Rolfson
Rob G H H Nelissen
Arnd Steinbrück
Gearoid McGauran
Christophe Barea
Kajsa Erikson
Alma B Pedersen
Martyn Porter
author_facet Anne Lübbeke
Lotje A Hoogervorst
Perla J Marang-van de Mheen
Heather A Prentice
Ola Rolfson
Rob G H H Nelissen
Arnd Steinbrück
Gearoid McGauran
Christophe Barea
Kajsa Erikson
Alma B Pedersen
Martyn Porter
author_sort Anne Lübbeke
collection DOAJ
description Background and purpose: 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. Methods: 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. Results: 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. Conclusion: 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.
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spelling doaj-art-49f651c5c3134242a7a9ccf2eefeef442025-01-24T15:06:18ZengMedical Journals SwedenActa Orthopaedica1745-36741745-36822025-01-019610.2340/17453674.2024.42706Arthroplasty registries at a glance: an initiative of the International Society of Arthroplasty Registries (ISAR) to facilitate access, understanding, and reporting of registry data from an international perspectiveAnne Lübbeke0https://orcid.org/0000-0002-6905-6120Lotje A Hoogervorst1https://orcid.org/0000-0001-5343-6965Perla J Marang-van de Mheen2Heather A Prentice3https://orcid.org/0000-0002-2200-6564Ola Rolfson4https://orcid.org/0000-0001-6534-1242Rob G H H Nelissen5https://orcid.org/0000-0003-1228-4162Arnd Steinbrück6Gearoid McGauran7https://orcid.org/0009-0005-3615-1876Christophe Barea8https://orcid.org/0000-0003-1781-9453Kajsa Erikson9Alma B Pedersen10https://orcid.org/0000-0002-3288-9401Martyn Porter11Division of Orthopaedics and Trauma Surgery, Geneva University Hospitals and University of Geneva, Switzerland; Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, UKDepartment of Orthopaedics, Leiden University Medical Center, The NetherlandsDepartment of Orthopaedics, Leiden University Medical Center; Safety & Security Science, Delft University of Technology, The NetherlandsMedical Device Surveillance & Assessment, Kaiser Permanente, San Diego, CA, USADepartment of Orthopedics, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden and the Swedish Arthroplasty Register, Gothenburg, SwedenDepartment of Orthopaedics, Leiden University Medical Center, The NetherlandsGerman Arthroplasty Registry (EPRD), Berlin, Germany Medical Devices Department, Health Products Regulatory Authority, Dublin, IrelandDivision of Orthopaedics and Trauma Surgery, Geneva University Hospitals and University of Geneva, SwitzerlandDepartment of Orthopedics, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden and the Swedish Arthroplasty Register, Gothenburg, SwedenDepartment of Clinical Epidemiology, Aarhus University Hospital, DK and Department of Clinical Medicine, Aarhus University, DenmarkEmeritus Consultant Orthopaedic Surgeon, Wrightington Hospital; Bristol University, UK Background and purpose: 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. Methods: 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. Results: 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. Conclusion: 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. https://actaorthop.org/actao/article/view/42706ArthroplastyHipImplantsKneeShoulder
spellingShingle Anne Lübbeke
Lotje A Hoogervorst
Perla J Marang-van de Mheen
Heather A Prentice
Ola Rolfson
Rob G H H Nelissen
Arnd Steinbrück
Gearoid McGauran
Christophe Barea
Kajsa Erikson
Alma B Pedersen
Martyn Porter
Arthroplasty registries at a glance: an initiative of the International Society of Arthroplasty Registries (ISAR) to facilitate access, understanding, and reporting of registry data from an international perspective
Acta Orthopaedica
Arthroplasty
Hip
Implants
Knee
Shoulder
title Arthroplasty registries at a glance: an initiative of the International Society of Arthroplasty Registries (ISAR) to facilitate access, understanding, and reporting of registry data from an international perspective
title_full Arthroplasty registries at a glance: an initiative of the International Society of Arthroplasty Registries (ISAR) to facilitate access, understanding, and reporting of registry data from an international perspective
title_fullStr Arthroplasty registries at a glance: an initiative of the International Society of Arthroplasty Registries (ISAR) to facilitate access, understanding, and reporting of registry data from an international perspective
title_full_unstemmed Arthroplasty registries at a glance: an initiative of the International Society of Arthroplasty Registries (ISAR) to facilitate access, understanding, and reporting of registry data from an international perspective
title_short Arthroplasty registries at a glance: an initiative of the International Society of Arthroplasty Registries (ISAR) to facilitate access, understanding, and reporting of registry data from an international perspective
title_sort arthroplasty registries at a glance an initiative of the international society of arthroplasty registries isar to facilitate access understanding and reporting of registry data from an international perspective
topic Arthroplasty
Hip
Implants
Knee
Shoulder
url https://actaorthop.org/actao/article/view/42706
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