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Data quality and pa...
Data quality and patient characteristics in European ANCA-associated vasculitis registries : data retrieval by federated querying
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- Gisslander, Karl (author)
- Lund University,Lunds universitet,Reumatologi och molekylär skelettbiologi,Sektion III,Institutionen för kliniska vetenskaper, Lund,Medicinska fakulteten,Rheumatology,Section III,Department of Clinical Sciences, Lund,Faculty of Medicine
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- Rutherford, Matthew (author)
- University of Glasgow
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- Aslett, Louis (author)
- Durham University
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- Basu, Neil (author)
- University of Glasgow
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- Dradin, François (author)
- Telemedicine Technologies
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- Hederman, Lucy (author)
- Trinity College Dublin
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- Hruskova, Zdenka (author)
- General University Hospital in Prague,Charles University in Prague
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- Kardaoui, Hicham (author)
- Cochin Hospital,Université Paris Cité
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- Lamprecht, Peter (author)
- British Columbia Children's Hospital
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- Lichołai, Sabina (author)
- Jagiellonian University
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- Musial, Jacek (author)
- Jagiellonian University
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- O'sullivan, Declan (author)
- Trinity College Dublin
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- Puechal, Xavier (author)
- French Vasculitis Study Group,Cochin Hospital
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- Scott, Jennifer (author)
- Trinity College Dublin
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- Segelmark, Mårten (author)
- Lund University,Lunds universitet,Njurmedicin,Sektion II,Institutionen för kliniska vetenskaper, Lund,Medicinska fakulteten,Autoimmunitet och njursjukdomar,Forskargrupper vid Lunds universitet,Nephrology,Section II,Department of Clinical Sciences, Lund,Faculty of Medicine,Autoimmunity and kidney diseases,Lund University Research Groups,Skåne University Hospital
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- Straka, Richard (author)
- General University Hospital in Prague
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- Terrier, Benjamin (author)
- Cochin Hospital,French Vasculitis Study Group
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- Tesar, Vladimir (author)
- Charles University in Prague,General University Hospital in Prague
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- Tesi, Michelangelo (author)
- Meyer Children's Hospital
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- Vaglio, Augusto (author)
- Meyer Children's Hospital
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- Wandrei, Dagmar (author)
- Albert-Ludwigs University Freiburg
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- White, Arthur (author)
- Trinity College Dublin
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- Wójcik, Krzysztof (author)
- Jagiellonian University
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- Yaman, Beyza (author)
- Trinity College Dublin
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- Little, Mark A. (author)
- Trinity College Dublin
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- Mohammad, Aladdin J. (author)
- Lund University,Lunds universitet,Reumatologi och molekylär skelettbiologi,Sektion III,Institutionen för kliniska vetenskaper, Lund,Medicinska fakulteten,Lund Vasculitis Epidemiology Research Group,Forskargrupper vid Lunds universitet,Rheumatology,Section III,Department of Clinical Sciences, Lund,Faculty of Medicine,Lund University Research Groups,University of Cambridge
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(creator_code:org_t)
- 2023
- 2023
- English 9 s.
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In: Annals of the Rheumatic Diseases. - 0003-4967. ; 83:1, s. 112-120
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http://dx.doi.org/10... (free)
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https://lup.lub.lu.s...
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Abstract
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- Objectives This study aims to describe the data structure and harmonisation process, explore data quality and define characteristics, treatment, and outcomes of patients across six federated antineutrophil cytoplasmic antibody-associated vasculitis (AAV) registries. Methods Through creation of the vasculitis-specific Findable, Accessible, Interoperable, Reusable, VASCulitis ontology, we harmonised the registries and enabled semantic interoperability. We assessed data quality across the domains of uniqueness, consistency, completeness and correctness. Aggregated data were retrieved using the semantic query language SPARQL Protocol and Resource Description Framework Query Language (SPARQL) and outcome rates were assessed through random effects meta-analysis. Results A total of 5282 cases of AAV were identified. Uniqueness and data-type consistency were 100% across all assessed variables. Completeness and correctness varied from 49%-100% to 60%-100%, respectively. There were 2754 (52.1%) cases classified as granulomatosis with polyangiitis (GPA), 1580 (29.9%) as microscopic polyangiitis and 937 (17.7%) as eosinophilic GPA. The pattern of organ involvement included: lung in 3281 (65.1%), ear-nose-throat in 2860 (56.7%) and kidney in 2534 (50.2%). Intravenous cyclophosphamide was used as remission induction therapy in 982 (50.7%), rituximab in 505 (17.7%) and pulsed intravenous glucocorticoid use was highly variable (11%-91%). Overall mortality and incidence rates of end-stage kidney disease were 28.8 (95% CI 19.7 to 42.2) and 24.8 (95% CI 19.7 to 31.1) per 1000 patient-years, respectively. Conclusions In the largest reported AAV cohort-study, we federated patient registries using semantic web technologies and highlighted concerns about data quality. The comparison of patient characteristics, treatment and outcomes was hampered by heterogeneous recruitment settings.
Subject headings
- MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Reumatologi och inflammation (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Rheumatology and Autoimmunity (hsv//eng)
Keyword
- epidemiology
- granulomatosis with polyangiitis
- quality indicators, health care
- systemic vasculitis
Publication and Content Type
- art (subject category)
- ref (subject category)
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- By the author/editor
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Gisslander, Karl
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Rutherford, Matt ...
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Aslett, Louis
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Basu, Neil
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Dradin, François
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Hederman, Lucy
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show more...
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Hruskova, Zdenka
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Kardaoui, Hicham
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Lamprecht, Peter
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Lichołai, Sabina
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Musial, Jacek
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O'sullivan, Decl ...
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Puechal, Xavier
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Scott, Jennifer
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Segelmark, Mårte ...
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Straka, Richard
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Terrier, Benjami ...
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Tesar, Vladimir
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Tesi, Michelange ...
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Vaglio, Augusto
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Wandrei, Dagmar
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White, Arthur
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Wójcik, Krzyszto ...
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Yaman, Beyza
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Little, Mark A.
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Mohammad, Aladdi ...
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- MEDICAL AND HEALTH SCIENCES
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MEDICAL AND HEAL ...
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and Clinical Medicin ...
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and Rheumatology and ...
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Annals of the Rh ...
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Lund University