New global study will explore survival and lung transplantation in the era of CFTR modulators

TORONTO, May 12, 2026 – Cystic Fibrosis Canada and the Canadian Institutes of Health Research (CIHR) are proud to announce a new funding partnership supporting a global research project led by Dr. Anne Stephenson of St. Michael’s Hospital. 

People with cystic fibrosis (CF) are living longer than ever before. For some, new therapies have dramatically improved health outcomes, sometimes delaying or even preventing the need for lung transplantation. But for others, transplant remains an important part of the CF story. 

Through a joint investment of $100,000, Cystic Fibrosis Canada and CIHR are supporting Survival and Transplantation: A Global Experience in Cystic Fibrosis. The project will explore how survival and lung transplantation are changing in the era of CFTR modulators by analyzing data from 96,000 people with CF across 45 countries. 

Led by Dr. Stephenson, the research will examine the portion of the CF population that still requires transplant, how that has changed in recent years, and what life after transplant looks like today. It will also compare countries with different levels of access to therapies to better understand how treatment access is shaping outcomes for people with CF around the world. 

While fewer people with CF need lung transplants, those who do often have more advanced disease, more complex health needs or rare mutations that current therapies do not treat. This research will help make sure those experiences are still seen, understood and included as CF care continues to evolve. 

“CF care is changing quickly, but it is important that we continue to understand and support the people who still face severe disease and transplant,” said Dr. Paul Eckford, Chief Scientific Officer, Cystic Fibrosis Canada. “This research will help ensure no one is left behind.” 

The findings will give people with CF, families, healthcare teams and advocates a clearer understanding of what transplant looks like today, those who are most at risk, and where more support, research and access are still needed. 

The project is supported through a CIHR Institute of Circulatory and Respiratory Health Priority Announcement in partnership with Cystic Fibrosis Canada. Dr. Stephenson is also the recipient of the Erik and Birthe Andersen Senior Scientist Award, recognizing the potential impact of this work and her longstanding contributions to cystic fibrosis research.