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Commonalities and differences in set-up and data collection across European spondyloarthritis registries — results from the EuroSpA collaboration
BACKGROUND: In European axial spondyloarthritis (axSpA) and psoriatic arthritis (PsA) clinical registries, we aimed to investigate commonalities and differences in (1) set-up, clinical data collection; (2) data availability and completeness; and (3) wording, recall period, and scale used for selecte...
Autores principales: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10585911/ https://www.ncbi.nlm.nih.gov/pubmed/37858143 http://dx.doi.org/10.1186/s13075-023-03184-7 |
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author | Linde, Louise Ørnbjerg, Lykke M. Rasmussen, Simon H. Love, Thorvardur Jon Loft, Anne Gitte Závada, Jakub Vencovský, Jiří Laas, Karin Nordstrom, Dan Sokka-Isler, Tuulikki Gudbjornsson, Bjorn Gröndal, Gerdur Iannone, Florenzo Ramonda, Roberta Hellamand, Pasoon Kristianslund, Eirik K. Kvien, Tore K. Rodrigues, Ana M. Santos, Maria J. Codreanu, Catalin Rotar, Ziga Tomšič, Matija Castrejon, Isabel Díaz-Gonzáles, Federico Di Giuseppe, Daniela Ljung, Lotta Nissen, Michael J. Ciurea, Adrian Macfarlane, Gary J. Heddle, Maureen Glintborg, Bente Østergaard, Mikkel Hetland, Merete L. |
author_facet | Linde, Louise Ørnbjerg, Lykke M. Rasmussen, Simon H. Love, Thorvardur Jon Loft, Anne Gitte Závada, Jakub Vencovský, Jiří Laas, Karin Nordstrom, Dan Sokka-Isler, Tuulikki Gudbjornsson, Bjorn Gröndal, Gerdur Iannone, Florenzo Ramonda, Roberta Hellamand, Pasoon Kristianslund, Eirik K. Kvien, Tore K. Rodrigues, Ana M. Santos, Maria J. Codreanu, Catalin Rotar, Ziga Tomšič, Matija Castrejon, Isabel Díaz-Gonzáles, Federico Di Giuseppe, Daniela Ljung, Lotta Nissen, Michael J. Ciurea, Adrian Macfarlane, Gary J. Heddle, Maureen Glintborg, Bente Østergaard, Mikkel Hetland, Merete L. |
author_sort | Linde, Louise |
collection | PubMed |
description | BACKGROUND: In European axial spondyloarthritis (axSpA) and psoriatic arthritis (PsA) clinical registries, we aimed to investigate commonalities and differences in (1) set-up, clinical data collection; (2) data availability and completeness; and (3) wording, recall period, and scale used for selected patient-reported outcome measures (PROMs). METHODS: Data was obtained as part of the EuroSpA Research Collaboration Network and consisted of (1) an online survey and follow-up interview, (2) upload of real-world data, and (3) selected PROMs included in the online survey. RESULTS: Fifteen registries participated, contributing 33,948 patients (axSpA: 21,330 (63%), PsA: 12,618 (37%)). The reported coverage of eligible patients ranged from 0.5 to 100%. Information on age, sex, biological/targeted synthetic disease-modifying anti-rheumatic drug treatment, disease duration, and C-reactive protein was available in all registries with data completeness between 85% and 100%. All PROMs (Bath Ankylosing Spondylitis Disease Activity and Functional Indices, Health Assessment Questionnaire, and patient global, pain and fatigue assessments) were more complete after 2015 (68–86%) compared to prior (50–79%). Patient global, pain and fatigue assessments showed heterogeneity between registries in terms of wording, recall periods, and scale. CONCLUSION: Important heterogeneity in registry design and data collection across fifteen European axSpA and PsA registries was observed. Several core measures were widely available, and an increase in data completeness of PROMs in recent years was identified. This study might serve as a basis for examining how differences in data collection across registries may impact the results of collaborative research in the future. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13075-023-03184-7. |
format | Online Article Text |
id | pubmed-10585911 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-105859112023-10-20 Commonalities and differences in set-up and data collection across European spondyloarthritis registries — results from the EuroSpA collaboration Linde, Louise Ørnbjerg, Lykke M. Rasmussen, Simon H. Love, Thorvardur Jon Loft, Anne Gitte Závada, Jakub Vencovský, Jiří Laas, Karin Nordstrom, Dan Sokka-Isler, Tuulikki Gudbjornsson, Bjorn Gröndal, Gerdur Iannone, Florenzo Ramonda, Roberta Hellamand, Pasoon Kristianslund, Eirik K. Kvien, Tore K. Rodrigues, Ana M. Santos, Maria J. Codreanu, Catalin Rotar, Ziga Tomšič, Matija Castrejon, Isabel Díaz-Gonzáles, Federico Di Giuseppe, Daniela Ljung, Lotta Nissen, Michael J. Ciurea, Adrian Macfarlane, Gary J. Heddle, Maureen Glintborg, Bente Østergaard, Mikkel Hetland, Merete L. Arthritis Res Ther Research BACKGROUND: In European axial spondyloarthritis (axSpA) and psoriatic arthritis (PsA) clinical registries, we aimed to investigate commonalities and differences in (1) set-up, clinical data collection; (2) data availability and completeness; and (3) wording, recall period, and scale used for selected patient-reported outcome measures (PROMs). METHODS: Data was obtained as part of the EuroSpA Research Collaboration Network and consisted of (1) an online survey and follow-up interview, (2) upload of real-world data, and (3) selected PROMs included in the online survey. RESULTS: Fifteen registries participated, contributing 33,948 patients (axSpA: 21,330 (63%), PsA: 12,618 (37%)). The reported coverage of eligible patients ranged from 0.5 to 100%. Information on age, sex, biological/targeted synthetic disease-modifying anti-rheumatic drug treatment, disease duration, and C-reactive protein was available in all registries with data completeness between 85% and 100%. All PROMs (Bath Ankylosing Spondylitis Disease Activity and Functional Indices, Health Assessment Questionnaire, and patient global, pain and fatigue assessments) were more complete after 2015 (68–86%) compared to prior (50–79%). Patient global, pain and fatigue assessments showed heterogeneity between registries in terms of wording, recall periods, and scale. CONCLUSION: Important heterogeneity in registry design and data collection across fifteen European axSpA and PsA registries was observed. Several core measures were widely available, and an increase in data completeness of PROMs in recent years was identified. This study might serve as a basis for examining how differences in data collection across registries may impact the results of collaborative research in the future. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13075-023-03184-7. BioMed Central 2023-10-19 2023 /pmc/articles/PMC10585911/ /pubmed/37858143 http://dx.doi.org/10.1186/s13075-023-03184-7 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
spellingShingle | Research Linde, Louise Ørnbjerg, Lykke M. Rasmussen, Simon H. Love, Thorvardur Jon Loft, Anne Gitte Závada, Jakub Vencovský, Jiří Laas, Karin Nordstrom, Dan Sokka-Isler, Tuulikki Gudbjornsson, Bjorn Gröndal, Gerdur Iannone, Florenzo Ramonda, Roberta Hellamand, Pasoon Kristianslund, Eirik K. Kvien, Tore K. Rodrigues, Ana M. Santos, Maria J. Codreanu, Catalin Rotar, Ziga Tomšič, Matija Castrejon, Isabel Díaz-Gonzáles, Federico Di Giuseppe, Daniela Ljung, Lotta Nissen, Michael J. Ciurea, Adrian Macfarlane, Gary J. Heddle, Maureen Glintborg, Bente Østergaard, Mikkel Hetland, Merete L. Commonalities and differences in set-up and data collection across European spondyloarthritis registries — results from the EuroSpA collaboration |
title | Commonalities and differences in set-up and data collection across European spondyloarthritis registries — results from the EuroSpA collaboration |
title_full | Commonalities and differences in set-up and data collection across European spondyloarthritis registries — results from the EuroSpA collaboration |
title_fullStr | Commonalities and differences in set-up and data collection across European spondyloarthritis registries — results from the EuroSpA collaboration |
title_full_unstemmed | Commonalities and differences in set-up and data collection across European spondyloarthritis registries — results from the EuroSpA collaboration |
title_short | Commonalities and differences in set-up and data collection across European spondyloarthritis registries — results from the EuroSpA collaboration |
title_sort | commonalities and differences in set-up and data collection across european spondyloarthritis registries — results from the eurospa collaboration |
topic | Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10585911/ https://www.ncbi.nlm.nih.gov/pubmed/37858143 http://dx.doi.org/10.1186/s13075-023-03184-7 |
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