Researchers
- Information on how the registry supports research and patient care
- Research showcase -> link to ‘publications’ section
- Clinical data collection sites
- Data protection policies and ethical guidelines ‘Privacy Policy’
- Detailed information on how data is collected, stored and protected
- Compliance with relevant privacy laws
Our Researchers
Our team comprises distinguished researchers and committed professionals who collaborate closely with clinicians, patients, and caregivers to advance the objectives of CARE-PF.
What Data Do We Collect?
CARE-PF collects comprehensive data about the diagnosis, demographics, risk factors, treatments, and outcomes, as well as detailed clinical and patient-reported measures. This data helps drive impactful research and supports advancements in care for those living with pulmonary fibrosis.
Demographics: Age, sex, race
Residential address: Postal code, geocoding
Risk factors / Exposures: Smoking, medications, environmental, occupational
Comorbidities: Major comorbidities (patient-reported)
Patient-reported outcomes: Dyspnea, cough, quality of life
Treatments: Pulmonary fibrosis medications, oxygen, pulmonary rehabilitation
Anthropometric: Height, weight, body mass index
Lung function: Multiple measures of airflow and gas exchange, including FVC, FEV1, FEV1/FVC ratio, TLC, RV, DLCO
Functional capacity: 6-minute walk distance, baseline & exertional oxygen saturation
Laboratory: Basic and extended autoantibody panel
Imaging: Computed tomography pattern
Lung biopsy: Type of biopsy, biopsy pattern
Outcomes: Mortality, lung transplant, hospital admission
Our Sites
CARE-PF connects eight major sites across the country – from Vancouver to Montreal – with over 7,000 patients enrolled and more than 1,000 new added participants each year. As one of the largest international registries, CARE-PF is uniquely positioned to advance our understanding of pulmonary fibrosis characteristics, treatment approaches, and patient outcomes.