Amanda Turkiewicz

The Toronto Cystic Fibrosis Patient Data Registry

The Toronto Cystic Fibrosis Data Registry has been in existence since the late 1970s as a means to monitor important statistical trends in the Toronto CF population. Like the national CF patient data registry managed by the Canadian CF Foundation, the Toronto registry collect information on individuals with CF who attend the adult CF centre as well as those individuals followed at the Hospital for Sick Children. This data helps to better understand the illness and ultimately improve care and survival of those with CF.

Important clinical data such as lung function, nutrition markers (e.g. height and weight), microbiology, and CF-related complications are followed within the registry. The Toronto CF registry collects this information after every visit with the CF health care team. All data is housed in a secure database at the Hospital for Sick Children. This information is used for clinical care as well as research purposes.

If you have not already done so, you will be asked to give your consent to allow us to submit data from each clinical encounter to the Toronto CF registry.