It is with great pride and a collective sense of achievement that we present the SA Cystic
Fibrosis Registry report for 2019-2020. The collection of data for this period coincided with
a time in which healthcare provision and services for people with CF were severely disrupted
by the COVID-19 pandemic. It was a challenging task for all those involved in updating the
registry, particularly our data administrators who collect and process the data.

The SA registry has now captured information of 525 people with CF as compared to 449
reported at the end of 2018. This means that there has been significant progress in capturing
the data of people with CF in SA, thanks to all those involved in the process. The information
in our registry is a key factor in improving CF treatment in SA, and will facilitate access to
new treatments for all our patients.

From an international perspective, we are now in a position to benchmark our treatment
methods and results against leading countries in the field of CF treatment. The registry has
already proved useful in identifying areas of care that need improvement, trends in emerging
infections and potential for clinical trials.

This report is aimed at a wide audience including doctors, CF families and other stakeholders
such as medical aids and the Department of Health. The statistics gleaned from the registry
will continue to provide information that is essential when engaging with all relevant parties
in pursuit of access to promising new medicines such as CFTR modulators.

SACFA offers a special word of thanks to the registry steering committee, Marlize Frauendorf
and Janine Verstraete, for their continued support in maintaining our CF Registry. SACFA is
committed to ensuring the sustainability of this project and appeals for the support of the
CF community going forward.

Full report – 2019/2020


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