Commonalities and differences in set-up and data collection across European spondyloarthritis registries - results from the EuroSpA collaboration.
Louise LindeLykke M ØrnbjergSimon H RasmussenThorvardur Jon LoveAnne Gitte LoftJakub ZávadaJiří VencovskýKarin LaasDan NordstromTuulikki Sokka-IslerBjorn GudbjornssonGerdur GröndalFlorenzo IannoneRoberta RamondaPasoon HellamandEirik K KristianslundTore K KvienAna M RodriguesMaria J SantosCatalin CodreanuZiga RotarMatija TomšičIsabel CastrejonFederico Díaz-GonzálesDaniela Di GiuseppeLotta LjungMichael J NissenAdrian CiureaGary J MacfarlaneMaureen HeddleBente GlintborgMikkel ØstergaardMerete L HetlandPublished in: Arthritis research & therapy (2023)
Important heterogeneity in registry design and data collection across fifteen European axSpA and PsA registries was observed. Several core measures were widely available, and an increase in data completeness of PROMs in recent years was identified. This study might serve as a basis for examining how differences in data collection across registries may impact the results of collaborative research in the future.