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Data quality and patient characteristics in European ANCA-associated vasculitis registries : data retrieval by federated querying

Gisslander, Karl LU orcid ; Rutherford, Matthew LU orcid ; Aslett, Louis ; Basu, Neil ; Dradin, François ; Hederman, Lucy ; Hruskova, Zdenka ; Kardaoui, Hicham ; Lamprecht, Peter and Lichołai, Sabina , et al. (2023) In Annals of the Rheumatic Diseases 83(1). p.112-120
Abstract

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... (More)

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.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
epidemiology, granulomatosis with polyangiitis, quality indicators, health care, systemic vasculitis
in
Annals of the Rheumatic Diseases
volume
83
issue
1
pages
9 pages
publisher
BMJ Publishing Group
external identifiers
  • pmid:37907255
  • scopus:85179363649
ISSN
0003-4967
DOI
10.1136/ard-2023-224571
language
English
LU publication?
yes
id
8c9e2c36-5267-4968-a5c5-58c15820d100
date added to LUP
2024-01-11 12:25:22
date last changed
2024-04-12 06:17:16
@article{8c9e2c36-5267-4968-a5c5-58c15820d100,
  abstract     = {{<p>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.</p>}},
  author       = {{Gisslander, Karl and Rutherford, Matthew and Aslett, Louis and Basu, Neil and Dradin, François and Hederman, Lucy and Hruskova, Zdenka and Kardaoui, Hicham and Lamprecht, Peter and Lichołai, Sabina and Musial, Jacek and O'sullivan, Declan and Puechal, Xavier and Scott, Jennifer and Segelmark, Mårten and Straka, Richard and Terrier, Benjamin and Tesar, Vladimir and Tesi, Michelangelo and Vaglio, Augusto and Wandrei, Dagmar and White, Arthur and Wójcik, Krzysztof and Yaman, Beyza and Little, Mark A. and Mohammad, Aladdin J.}},
  issn         = {{0003-4967}},
  keywords     = {{epidemiology; granulomatosis with polyangiitis; quality indicators, health care; systemic vasculitis}},
  language     = {{eng}},
  number       = {{1}},
  pages        = {{112--120}},
  publisher    = {{BMJ Publishing Group}},
  series       = {{Annals of the Rheumatic Diseases}},
  title        = {{Data quality and patient characteristics in European ANCA-associated vasculitis registries : data retrieval by federated querying}},
  url          = {{http://dx.doi.org/10.1136/ard-2023-224571}},
  doi          = {{10.1136/ard-2023-224571}},
  volume       = {{83}},
  year         = {{2023}},
}