The Canadian Cystic Fibrosis Registry, or CCFR, was created in the 1970s as a way to monitor important clinical trends in the Canadian CF population. The Canadian CF Registry continues to be an extremely valuable resource of national CF data that is used to improve the quality of patient care, influence research, and bolster advocacy efforts across the country. These data are also leveraged to critically assess health outcomes of new therapies and identify potentially eligible patients for new and emerging treatments.
When you consent to have your clinical data included in the Canadian Cystic Fibrosis Registry, you enable researchers and clinicians to conduct research which allow us to examine patterns of disease within the CF population, respond to emerging health care issues, track clinical outcomes over time, and ultimately improve care and survival of those with CF in Canada. The registry collects important clinical data on virtually all Canadians with CF who are followed at one of the 41 accredited CF centres across the country. Some of the information that is collected includes lung function measurements, nutrition markers (e.g. height and weight), microbiology, and CF-related complications.
You are also able to access your own data within the registry by signing up to MyCFLifePortal. MyCFLifePortal is a secure website and is an extension of the Canadian CF Registry system and is based on the current design of the website used by clinics. A major fundamental difference between the two websites is that MyCFLifePortal will show only patient-level data and is read-only meaning that patients can view but cannot edit/change the information. If you are interested in gaining access to your registry data through the portal, speak to your CF team in clinic and they can get you signed up.