The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry

Table 2

Schedule of study measurements.

Measurements	Baseline	Follow-up
Diagnostic criteria	X	+/−
Connective tissue disease serology
HRCT: UIP pattern and favoured diagnosis
Surgical lung biopsy: histological pattern
Baseline clinical data	X	+/−
Demographics (e.g., age, sex, race)
Smoking history
Family history
Medication exposures
Occupational exposures
Environmental exposures
Comorbidities
Symptoms	X	X
Dyspnea (UCSD SOBQ)
Cough (visual analogue scale)
Additional symptoms
Quality of life	X	X
St. George’s Respiratory Questionnaire
European Quality of Life 5 Dimensions questionnaire
Pulmonary function tests	X	X
6-minute walk tests	X	X
Additional measurements	+/−	+/−

Follow-up data will be obtained when clinically indicated. Changes to diagnosis and baseline data will be recorded if applicable (e.g., a change in diagnosis and new comorbidity).
Additional measurements will be recorded when performed (e.g., echocardiogram, right heart catheterization, and bronchoscopy).
HRCT, high-resolution computed tomography; UIP, usual interstitial pneumonia; UCSD SOBQ, University of California San Diego Shortness of Breath Questionnaire.