- Include
- Background on why the registry was created
- The registry’s vision, mission, and values
- Learn more about PF -> add a learn more button with a link to a third party website
- Add Director’s message
- Call to action ‘join’ button
About CARE-PF
CARE-PF was established by Dr. Chris Ryerson and colleagues in 2015 with a goal to improve the lives of Canadians living with pulmonary fibrosis. It is the largest multi-centre pulmonary fibrosis registry in the world, now including over 7,000 patients with pulmonary fibrosis.
Why Do We Need a Registry
Pulmonary fibrosis is a rare and complex disease that affects approximately 40,000 Canadians and leads to approximately 5,000 deaths annually in Canada. Lung transplantation is the only definitive treatment option, but it may not be suitable for many patients due to strict eligibility criteria and procedural complications. Other treatments merely slow the progression of the disease and are associated with significant side effects. Therefore, a deeper and more comprehensive understanding of pulmonary fibrosis is crucial to improve the lives of affected individuals. However, the rarity and heterogeneity of this condition makes it challenging to study in small patient cohorts from individual clinics necessitating the need for larger, national datasets.
CARE-PF is addressing this challenge by characterizing patients with pulmonary fibrosis and describing their health outcomes across Canada. CARE-PF enables detailed analyses of healthcare use patterns, which will serve as the foundation for future healthcare planning and resource allocation, ultimately enhancing the care for individuals living with this disease.