Commonalities and differences in set-up and data collection across European spondyloarthritis registries — results from the EuroSpA collaboration

Linde, Louise; Ørnbjerg, Lykke M.; Rasmussen, Simon H.; Love, Thorvardur Jon; Loft, Anne Gitte; Závada, Jakub; Vencovský, Jiří; Laas, Karin; Nordstrom, Dan; Sokka-Isler, Tuulikki; Gudbjornsson, Bjorn; Gröndal, Gerdur; Iannone, Florenzo; Ramonda, Roberta; Hellamand, Pasoon; Kristianslund, Eirik K.; Kvien, Tore K.; Rodrigues, Ana M.; Santos, Maria J.; Codreanu, Catalin; Rotar, Ziga; Tomšič, Matija; Castrejon, Isabel; Díaz-Gonzáles, Federico; Di Giuseppe, Daniela; Ljung, Lotta; Nissen, Michael J.; Ciurea, Adrian; Macfarlane, Gary J.; Heddle, Maureen; Glintborg, Bente; Østergaard, Mikkel; Hetland, Merete L.

doi:10.1186/s13075-023-03184-7

Table 1 Set-up of 15 registries in EuroSpA

From: Commonalities and differences in set-up and data collection across European spondyloarthritis registries — results from the EuroSpA collaboration

Country	Czechia	Denmark	Estonia	Finland	Iceland	Italy	Netherlands	Norway	Portugal	Romania	Slovenia	Spain	Sweden	Switzerland	UK
Registry	ATTRA	DANBIO	ESRBTR	ROB-FIN	ICEBIO	GISEA	AmSpA	NOR-DMARD	Reuma.pt	RRBR	Biorx.si	BIOBADASER	SRQ	SCQM	BSRBR-AS
General information
Patients included in the registry
AxSpA/PsA patients in the data completeness analyses (n)^a	3512/1331	4855/3652	<100/<100	1699/720	386/424	171/457	<100/-	1805/1052	1985/1094	1325/242	616/448	1126/1036	791/1084^b	1893/1021	1091/-
AxSpA, year of start	2002	2002	2013	2000	2008	2010	2019	2000	2009	2013	2010	2000	1999	2005	2012
PsA, year of start	2002	2002	2013	2000	2008	2010	-	2000	2009	2013	2010	2000	1999	2006	-
Other rheumatological conditions	√	√	√	√	√	√		√	√	√	√	√	√	√
Additional entry criteria
Treatment with a b/ts DMARD	√		√		√	√		√		√	√	√
Basis for diagnosis registration
ICD-10		√	√	√	√	√		√					√
Expert opinion	√	√					√		√	√		√		√
ASAS/mNY criteria	√	√			√		√		√	√	√			√	√
CASPAR criteria	√	√			√		-		√	√	√			√	-
Number of visits per year
First year	3	3	2	2-3	2	2	2	4	3	2	4	1	2	2	3
Subsequent years	2	2	2	1	1	2	2	2	3	2	2	1	2	2	1
Data entry
Electronic	√	√	√	√	√	√	√	√	√	√	√	√	√	√	√
Paper-based	√				√	√	√			√		√		√	√
Interactive fields		√	√				√	√	√	√	√	√	√	√	√
Medication
b/tsDMARDs	√	√	√	√	√	√	√	√	√	√	√	√	√	√	√
csDMARDs	√	√	√	√	√	√		√	√	√	√	√	√	√	√
NSAIDs	√	√					√	√	√				√	√	√
Oral glucocorticoids	√	√	√	√	√	√		√	√	√	√			√
Coverage
Geographic area covered by the registry
Nationwide	√	√	√		√				√	√	√	√	√	√	√
Estimate of eligible patients included
axSpA	95	95	95	60	95	15	0.5	25	10	100	70	5	82	10	0.5
PsA	95	85	95	60	95	10	-	25	15	100	60	4	76	10	-
Institutions collecting patient data
Private rheumatology practices	√	√			√				√	√			√	√
University hospital rheumatology departments	√	√	√	√	√	√	√	√	√	√	√	√	√	√	√
Other hospital rheumatology departments	√	√	√	√	√	√		√	√	√	√		√	√	√
Funding of registry activities (%)
Research grants	5			80				20	15	50	20				2
Public sector		15			100							10	50
Industry	95	85	100	20				80	85	50	80	90	50	90	98
Other						100^c	100^d							10

axSpA Axial spondyloarthritis, PsA Psoriatic arthritis, DMARD Disease-modifying anti-rheumatic drugs, ICD-10 International Classification of Diseases – tenth revision, ASAS Assessment of Spondyloarthritis International Society, mNY Modified New York, CASPAR Classification Criteria for Psoriatic Arthritis, NSAID Non-steroidal anti-inflammatory drugs, NA Not available
^aSecondary pseudonymized baseline data from initiation of the first biologic (b) or targeted synthetic (ts) disease-modifying anti-rheumatic drug (DMARD) treatment on patients with a clinical diagnosis of axSpA and PsA, 18 years or older, followed in one of the participating registries since the start of their first b/tsDMARD between 2000 to 2021
^bSweden has provided data on Secukinumab treated patients only
^cNational society for rheumatology is sponsor
^dGeneral research funds

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