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Table 2 Results regarding data availability and completeness

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

Data source

Pooled data from 15 European registries collecting information on patients with SpA

Pooled data (n=33,948)

Before January 1, 2015 (n=16,207)

From January 1, 2015 (n=21,423)

axSpA (n=21,330)

PsA (n=12,618)

Variables

No of registries with available data

Data completeness, mean % (range)a

Data completeness, mean %a

Demography

 Age

15

100 (100–100)

100%

100%

100%

100%

 Sex

15

100 (100–100)

100%

100%

100%

100%

 Weight

14

67 (7–100)

71%

64%

68%

65%

 Height

14

64 (13–100)

65%

64%

65%

63%

Lifestyle

 Smoking

13

85 (15–100)

82%

88%

85%

84%

 Alcohol consumptionb

4

29 (7–76)

21%

44%

26%

32%

Disease duration and classification criteria

 Disease duration (years)

15

92 (53–100)

96%

88%

93%

90%

 Symptom duration (years)

9

75 (33–100)

72%

78%

75%

74%

 ASAS criteria

9

46 (5–100)

47%

46%

63%

16%

 Modified New York criteria

9

38 (5–100)

40%

35%

49%

17%

 CASPAR criteria

7

27 (6–100)

29%

26%

15%

48%

Clinical characteristics at baseline

 Swollen joint count (28)

14

60 (28–100)

59%

61%

45%

85%

 Tender joint count (28)

14

56 (28–100)

53%

59%

38%

85%

 Swollen joint count (66)

10

29 (5–74)

20%

37%

16%

50%

 Tender joint count (68)

10

31 (6–76)

21%

39%

17%

54%

 Physician global

13

71 (13–92)

71%

71%

64%

82%

 Enthesitis (MASES)

6

25 (6–70)

20%

29%

29%

16%

 Dactylitis (yes/no)

5

33 (10–97)

40%

28%

26%

46%

 Skin (PASI binary)

4

40 (1–92)

53%

31%

35%

49%

 Nails (NAPSI binary)

2

44 (27–83)

44%

44%

23%

92%

 BASMI

8

26 (3–100)

24%

27%

39%

7%

Biological or targeted synthetic DMARD treatment

 Name of b/tsDMARD

15

100 (100–100)

100%

100%

100%

100%

 Treatment series number

15

100 (100–100)

100%

100%

100%

100%

 Treatment start date

15

100 (100–100)

100%

100%

100%

100%

 Treatment stop date

15

53 (5–71)

69%

39%

51%

56%

Concomitant medication at baseline

 Conventional synthetic (cs) DMARD

14

71 (2–100)

67%

74%

68%

75%

 Methotrexate

14

66 (2–100)

64%

68%

63%

71%

 Sulfasalazine

14

63 (2–100)

62%

65%

63%

65%

 Leflunomide

14

62 (2–100)

60%

63%

60%

64%

 Other csDMARDs

13

65 (2–100)

60%

68%

63%

67%

 Oral glucocorticoidsc

11

86 (33–100)

-

86%

84%

88%

 NSAIDs

8

56 (16–100)

42%

69%

61%

46%

Patient-reported outcomes at baseline

 BASDAI

15

63 (28–100)

54%

71%

78%

39%

 BASFI

11

59 (16–100)

50%

68%

74%

35%

 HAQ

12

68 (14–97)

63%

72%

58%

83%

 Patient global

14

82 (43–100)

79%

85%

79%

87%

 Patient fatigue

8

68 (23–90)

57%

79%

71%

64%

 Patient pain

13

77 (26–100)

68%

86%

74%

82%

Laboratory parameters at baseline

 CRP

15

85 (22–100)

88%

83%

85%

85%

 ESR

13

84 (46–100)

85%

82%

83%

85%

 HLA-B27

14

67 (8–95)

63%

71%

80%

46%

Peripheral and extra-musculoskeletal manifestations of spondyloarthritis (ever/never)

 Enthesitis

5

78 (73–100)

82%

75%

80%

73%

 Dactylitis

6

80 (4–100)

91%

72%

79%

81%

 Psoriasis

12

56 (2–100)

61%

53%

60%

50%

 Uveitis

11

84 (4–100)

87%

82%

83%

86%

 Inflammatory bowel disease

11

57 (1–100)

61%

53%

60%

51%

Comorbidities (ever/never)

 Cardiovascular

13

65 (10–100)

63%

68%

69%

59%

 Diabetes

13

55 (7–100)

53%

57%

54%

57%

 Kidney disease

12

66 (3–100)

65%

67%

69%

60%

  1. Unless otherwise stated, we used secondary 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 axial spondyloarthritis (axSpA) and psoriatic arthritis (PsA), 18 years or older, followed in one of the participating registries since the start of their first b/tsDMARD between 2000 to 2021. Sweden has provided data on Secukinumab-treated patients only
  2. ASAS Assessment of Spondyloarthritis International Society, CASPAR Classification Criteria for Psoriatic Arthritis, MASES Maastricht Ankylosing Spondylitis Enthesitis Index, PASI Psoriasis Area and Severity Index, NAPSI Nail Psoriasis Severity Index, BASMI Bath Ankylosing Spondylitis Metrology Index, NSAID non-steroidal anti-inflammatory drug, BASDAI Bath Ankylosing Spondylitis Disease Activity Index, BASFI Bath Ankylosing Spondylitis Functional Index, HAQ Health Assessment Questionnaire, CRP C-reactive protein, ESR Erythrocyte sedimentation rate, HLA-B27 Human Leukocyte Antigen subtypes B*2701-2759
  3. aAmong registries with available data on the variable
  4. bData based on patients who initiated a TNFi between January 1, 2009, and December 31, 2018
  5. cData based on patients who initiated a new b/tsDMARD from January 1, 2015, and May 31, 2022