Table 1.

The Swedish Idiopathic Pulmonary Fibrosis Registry variables

Demographics	Gender
	Date of birth
	Age
	Reference hospital
Diagnosis (IPF)	Time of diagnosis
	ICD-10
	Base for diagnosis:  - Clinical–radiological  - Biopsy-proven  - Based on MDC
Clinical	Height, Weight, BMI
information	Smoking status:  - Ex-smoker  - Current smoker  - Never smoker
	Pack-year
	Profession, professional/environmental exposure
	Chronic comorbidities
	Ongoing treatments
	Main symptoms and time of onset
	Clinical findings:  - Presence of gastric reflux  - Drumstick fingers  - Crackles at auscultation
Lung function	Lung plethysmography: FEV1, FEV1%, FVC, FVC%, FEV1/FVC, TLC, TLC%
	Diffusion capacity: DlCO%
	Pulse oximetry at rest; arterial blood gas analysis
	6MWT: saturation at rest and lowest value during/after the test; walk distance
Radiology	Chest X-ray
	HR CT:  - UIP pattern  - Possible UIP pattern  - Inconsistent with UIP pattern
Pathology	BAL: total cell count, cell differentials
	Lung biopsy (open or VATS):  - UIP pattern  - Probable UIP-pattern  - Possible UIP-pattern  - Not UIP-pattern
Quality of life	K-BILD questionnaire
IPF therapy	Date of start, date of stop
	IPF specific therapies:  - Pirfenidone  - Nintedanib  - NAC  - Triple therapy
	Best supportive therapy:  - Long-term oxygen therapy  - Physiotherapy  - Psychological support  - Palliation (morphine, benzodiazepine)
	Adverse events:  - Date of onset  - Type of AE  - Severity (according to CTCAE)  - Intervention  - Suspension/modification of the therapy
Outcome	Death:  - Date of death  - Cause of death
	Transplantation:  - Date of transplantation
	Follow-up:  - Lung function testing  - Radiology  - Quality of life (K-BILD)  - Ongoing treatments/AEs/modification of IPF-therapies

IPF: idiopathic pulmonary fibrosis; ICD-10: International Statistical Classification of Diseases and Related Health Problems – Tenth Revision; MDC: multi-disciplinary conference; BMI: body mass index; FEV1: forced expiratory volume in 1 s; FEV1%: forced expiratory volume in 1 s, % of the expected value; FVC: forced volume capacity; FVC%: forced volume capacity, % of the expected value; TLC: total lung capacity; TLC%: total lung capacity, % of the expected value; DlCO%: Diffusion capacity of carbon monoxide, % of the expected value; 6MWT: 6-min walking test; HR CT: high-resolution computed tomography; UIP: usual interstitial pneumonia; BAL: bronchoalveolar lavage; VATS: video-assisted thoracoscopy; K-BILD: King's Brief Interstitial Lung Disease Questionnaire; NAC: N-acetyl-cysteine; AE: adverse event; CTCAE: Common Terminology Criteria for Adverse Events.