Keeping up with the changing state of cystic fibrosis

Cystic Fibrosis Canada receives Canadian Drug Agency funding to continue strengthening the Canadian Cystic Fibrosis Registry  

Today, we were pleased to receive nearly $200,000 in funding from Canada’s Drug Agency (CDA) as part of their efforts to strengthen rare disease registries in Canada. 

The CDA’s funding means that beyond the donor dollars that support the ongoing operation of the Canadian Cystic Fibrosis Registry, CF Canada will be able to  ensure data collection is keeping up with the changing state of cystic fibrosis. This work will include strengthening the collection of data related to use of CFTR modulator therapies, home antibiotics, and future genetic therapies as well as continued work to ensure registry data are used effectively, efficiently, ethically, and securely.   

For example, a stronger CF registry will help to inform clinical trial design and document the outcomes of clinical research in instances where clinical trials haven’t taken place, which is common when it comes to rarer CF mutations because the population simply isn’t large enough for a clinical trial to take place. 

Data from the Canadian Cystic Fibrosis Registry provide a snapshot of the state of CF in Canada and are essential in identifying and monitoring efforts to improve treatment and care for CF patients. In recent years, data from the CF registry have been used to help make the case to regulators for expanded access to and reimbursement of Trikafta in younger populations with the most common CF mutation, F508del, and in people with some rarer mutations. 

Since the 1970s, the Canadian Cystic Fibrosis Registry has been the only Canada-wide registry capturing clinical data on nearly everyone living with CF in this country. By bringing together population-level data collected by Canada’s 40 CF clinics, it is a trusted, go-to information source for clinicians and researchers.