Data quality and patient characteristics in European ANCA-associated vasculitis registries: data retrieval by federated querying.
Karl GisslanderMatthew A RutherfordLouis AslettNeil BasuFrançois DradinLucy HedermanZdenka HruskovaHicham KardaouiPeter LamprechtSabina LichołaiJacek MusialDeclan O'SullivanXavier PuechalJennifer ScottMårten M SegelmarkRichard StrakaBenjamin TerrierVladimir TesarMichelangelo TesiAugusto VaglioDagmar WandreiArthur WhiteKrzysztof WojcikBeyza YamanMark A LittleAladdin J Mohammadnull nullPublished in: Annals of the rheumatic diseases (2023)
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.