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Eosinophilic Granulomatosis With Polyangiitis: A Real-World Study of Biologics and Sinus Surgery Use for Managing Nasal Polyposis.
Int Forum Allergy Rhinol
January 2025
Department of Otorhinolaryngology, Mayo Clinic in Arizona, Scottsdale, Arizona, USA.
Background/aim: Eosinophilic granulomatosis with polyangiitis (EGPA) is a multisystemic disease associated with nasal polyposis. Multiple biologics are used for managing EGPA, including some approved for nasal polyps (NP). This study investigated real-world biologic prescription patterns for EGPA and their impact on NP and endoscopic sinus surgery (ESS) use.
View Article and Find Full Text PDFOntology-based integration and querying of heterogeneous rare disease data sources - POLVAS perspective.
Comput Biol Med
February 2025
2nd Department of Internal Medicine, Jagiellonian University Medical College, ul. Jakubowskiego 2, 30-688 Kraków, Poland. Electronic address:
The integration of rare disease medical databases belonging to different countries is an important problem, as a large number of observations are required for reliable statistical inference of patient data in order to facilitate clinical research. Such integration of national registry data, which requires harmonization of the heterogeneous data sets into a unified view, is facilitated in the European FAIRVASC project by developing a domain-specific ontology. The FAIRVASC project is dedicated to the rare disease of anti-neutrophil cytoplasmic antibody (ANCA) associated vasculitis (AAV).
View Article and Find Full Text PDFQuerying ANCA-associated vasculitis in chronic Q fever-associated membranoproliferative glomerulonephritis.
Intern Med J
April 2024
Department of Nephrology, The Royal Melbourne Hospital, Melbourne, Victoria, Australia.
Data quality and patient characteristics in European ANCA-associated vasculitis registries: data retrieval by federated querying.
Ann Rheum Dis
January 2024
Clinical Sciences, Rheumatology, Lund University, Lund, Sweden.
Article Synopsis
- This study focuses on describing the structure and harmonization of six antineutrophil cytoplasmic antibody-associated vasculitis (AAV) registries, emphasizing data quality and patient outcomes.
- The researchers used a specialized ontology to align data across registries and employed SPARQL for data retrieval, finding that over 5,000 AAV cases showed variations in data completeness and correctness.
- The findings revealed significant information on treatment methods and patient characteristics but highlighted challenges in comparing outcomes due to different recruitment settings and data quality issues.
FAIRVASC: A semantic web approach to rare disease registry integration.
Comput Biol Med
June 2022
ADAPT, Trinity College Dublin, Ireland.
Rare disease data is often fragmented within multiple heterogeneous siloed regional disease registries, each containing a small number of cases. These data are particularly sensitive, as low subject counts make the identification of patients more likely, meaning registries are not inclined to share subject level data outside their registries. At the same time access to multiple rare disease datasets is important as it will lead to new research opportunities and analysis over larger cohorts.
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