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Data quality and patient characteristics in European ANCA-associated vasculitis registries: data retrieval by federated querying
K. Gisslander, M. Rutherford, L. Aslett, N. Basu, F. Dradin, L. Hederman, Z. Hruskova, H. Kardaoui, P. Lamprecht, S. Lichołai, J. Musial, D. O'Sullivan, X. Puechal, J. Scott, M. Segelmark, R. Straka, B. Terrier, V. Tesar, M. Tesi, A. Vaglio, D....
Jazyk angličtina Země Anglie, Velká Británie
Typ dokumentu metaanalýza, časopisecké články
Grantová podpora
Wellcome Trust - United Kingdom
NLK
ProQuest Central
od 1939-01-01 do Před 6 měsíci
Health & Medicine (ProQuest)
od 1939-01-01 do Před 6 měsíci
Family Health Database (ProQuest)
od 1939-01-01 do Před 6 měsíci
ROAD: Directory of Open Access Scholarly Resources
PubMed
37907255
DOI
10.1136/ard-2023-224571
Knihovny.cz E-zdroje
- MeSH
- ANCA-asociované vaskulitidy * farmakoterapie epidemiologie komplikace MeSH
- granulomatóza s polyangiitidou * farmakoterapie epidemiologie komplikace MeSH
- lidé MeSH
- mikroskopická polyangiitida * farmakoterapie epidemiologie MeSH
- protilátky proti cytoplazmě neutrofilů MeSH
- registrace MeSH
- správnost dat MeSH
- ukládání a vyhledávání informací MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- metaanalýza MeSH
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.
1st Faculty of Medicine Charles University Prague Czech Republic
2nd Department of Internal Medicine Jagiellonian University Medical College Krakow Poland
ADAPT SFI Centre School of Computer Science and Statistics Trinity College Dublin Dublin Ireland
Clinical Sciences Rheumatology Lund University Lund Sweden
Clinical Trials Unit Medical Center University of Freiburg Faculty of Medicine Freiburg Germany
Department of Clinical Sciences Lund University Lund Sweden
Department of Endocrinology Nephrology and Rheumatology Skåne University Hospital Lund Sweden
Department of Mathematical Science University of Durham Durham UK
Department of Medicine University of Cambridge Cambridge UK
Department of Nephrology General University Hospital Prague Czech Republic
Department of Rheumatology and Clinical Immunology Universitat zu Lubeck Lubeck Germany
French Vasculitis Study Group Paris France
General University Hospital Prague Praha Czech Republic
National Referral Center for Rare Systemic Autoimmune Diseases Hospital Cochin Paris France
Nephrology and Dialysis Unit Meyer Children's Hospital IRCCS Firenze Italy
School of Computer Science and Statistics Trinity College Dublin Dublin Ireland
School of Infection and Immunity University of Glasgow Glasgow UK
Telemedicine Technologies Liège Belgium
Trinity Kidney Centre Trinity Translational Medicine Institute Trinity College Dublin Dublin Ireland
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