The Danish nationwide clinical register for patients with rheumatoid arthritis: DANBIO

Figures & data

Figure 1 A patient using the touch screen.

Note: Reprinted with permission from DANBIO.

Table 1 Key variables in the DANBIO register

Type of variable	Name of variable	Disease group
Baseline variables
Sociodemographic factors
	Age	RA, Ax SpA, PsA
	Sex	RA, Ax SpA, PsA
PROMs	Marital status	RA, Ax SpA, PsA
PROMs	Educational level	RA, Ax SpA, PsA
Disease-related variables
	Diagnosis	RA, Ax SpA, PsA
	Year of diagnosis	RA, Ax SpA, PsA
	Previous DMARD treatment
	Anti-CCP and IgM-RF status (±)	RA
	MRI	Ax SpA
Health behavioral factors (once a year)
PROMs	Tobacco use	RA, Ax SpA, PsA
PROMs	Alcohol consumption	RA, Ax SpA, PsA
PROMs	Physical activity	RA, Ax SpA, PsA
PROMs	EQ-5D	RA, Ax SpA, PsA
	X-ray status (when indicated)	RA, PsA
Variables at each visit
Disease activity measures
	DAS28a	RA, PsA
	Tender joints count	RA, PsA
	Swollen joints count	RA, PsA
PROMs	VAS for pain	RA, Ax SpA, PsA
PROMs	VAS for fatigue	RA, Ax SpA, PsA
PROMs	VAS for patient’s global	RA, Ax SpA, PsA
	VAS for physician’s global	RA, Ax SpA, PsA
PROMs	Health Assessment	RA, PsA
	Questionnaire (HAQ)b
PROMs	BASDAIc	Ax SpA
PROMs	BASFId	Ax SpA
	BASMIe	Ax SpA
	Serum CRP	RA, Ax SpA, PsA
Current treatment (start date, dose, interval)	NSAID	Ax SpA
	csDMARDs	RA, Ax SpA, PsA
	bDMARDs	RA, Ax SpA, PsA
	Glucocorticoids	RA, Ax SpA, PsA
Variables at treatment termination
	Relevant disease activity measures	RA, Ax SpA, PsA
	Date and reason for withdrawal	RA, Ax SpA, PsA
Adverse effect variables
	Serious/not serious	RA, Ax SpA, PsA

Notes:

a DAS based on a 28 joint count (tender and swollen joint counts), serum CRP, and patient global health. DAS28 <3.2 indicates low disease activity; DAS28 between 3.3 and 5.1, moderate disease activity; and DAS28 >5.2 high disease activity (further explanation of DAS28 is found on www.das-score.nl).

b HAQ: 20 questions in eight categories of functioning that represent a comprehensive set of functional activities.

c Bath Ankylosing Spondylitis Disease Activity Index: a combined index comprising six questions about five major symptoms of Ax SpA.

d Bath Ankylosing Spondylitis Function Index: a combined index comprising ten questions about daily activities and ability to cope with everyday life.

e Bath Ankylosing Spondylitis Metrology Index: a combined index comprising five assessments of spinal mobility.

Abbreviations: Ax SpA, axial spondyloarthritis; DMARD, disease-modifying antirheumatic drugs; bDMARDs, biological disease-modifying antirheumatic drugs; CRP, C-reactive protein; csDMARDs, conventional synthetic disease-modifying antirheumatic drugs; DAS, disease activity score; HAQ, Health Assessment Questionnaire; NSAIDs, nonsteroid anti-inflammatory drugs; PROMs, patient-reported outcome measures; PsA, psoriatic arthritis; RA, rheumatoid arthritis; VAS, visual analog scale; Anti-CCP, anti-cyclic citrullinated peptide; IgM-RF, IgM rheumatoid factor; MRI, magnetic resonance imaging; EQ-5D, EuroQol-5D.

Figure 2 Overview of patient data.

Note: Reprinted with permission from DANBIO.

Figure 3 Number of adult rheumatologic patients initiating bDMARDs in Denmark over time across the geographical regions.

Note: Reprinted with permission from DANBIO.
Abbreviation: bDMARDs, biological disease-modifying antirheumatic drugs.

Table 2 Overview of the DANBIO quality indicators monitored in the Annual Clinical Quality Report

Indicator number	Indicator title	Standard (goal set for the indicator)
1	Close follow-up of newly diagnosed patients with RA	At least 80% of patients registered twice during the first year with disease activity level (DAS28a), functional status (HAQb), level of pain (VAS painc), and treatment
2	Longitudinal follow-up of all patients with RA	At least 90% of patients registered once a year with disease activity level (DAS28a), functional status (HAQb), level of pain (VAS painc), and treatment
3	Effective treatment of all patients with RA evaluated by disease activity level	Low disease activity level (DAS28a <3.2) in at least 66% of the registered patients
4	High functional status in all patients with RA	High functional status (HAQb <1) in at least 60% of the registered patients
5	Effective treatment of pain in all patients with RA	Low pain score (VAS painc <33 mm) in at least 60% of the registered patients
6	High-life quality in all patients with RA	High life quality score (VAS globald <33 mm) in at least 60% of the registered patients
7	Imaging by X-ray performed for all patients with RA (of hands, wrists, and feet)	X-ray status performed in at least 80% of the registered patients at the time of diagnosis and at shift between types of medical treatment

Notes:

a DAS based on a 28 joint count (tender and swollen joint counts), serum CRP, and patient global health. DAS28 <3.2 indicates low disease activity; DAS28 between 3.3 and 5.1, moderate disease activity; and DAS28 >5.2, high disease activity.

b HAQ: 20 questions in eight categories of functioning that represent a comprehensive set of functional activities.

c VAS for pain.

d VAS for patient’s global.

Abbreviations: CRP, C-reactive protein; DAS, disease activity score; HAQ, Health Assessment Questionnaire; RA, rheumatoid arthritis; VAS, visual analog scale.