What is the registry for?
Publishing of our first annual CF registry report for South Africa is testimony to the commitment of all CF doctors and CF families in our country, to promote the welfare of all our patients. The benefits of the registry are not always fully understood and appreciated by the public, so this report will go a long way towards clarifying the critical role of the registry in the years ahead. The emergence of promising new medicines such as Trikafta® targeting specific mutations, highlights the need for statistics on the CF population, in particular the CF mutation breakdown.
Who is it for?
The annual report is aimed at doctors, CF families and other stakeholders such as medical aids and the national Department of Health. The report analyses and interprets all the data contained in the registry to provide a better understanding of the status of CF patients in SA, and to benchmark how SA is doing in comparison to international trends.
Thanks to those involved
SACFA offers a special word of thanks to Dr Zampoli, the registry steering committee and authors of this report for getting the CF Registry off the ground in early 2018. Over the past 2-3 years an immense amount of work has gone into setting up the infrastructure and capturing medical information for most people living with CF in SA today. SACFA is committed to ensuring the sustainability of this project and appeals for the support of the CF community, and encourages everyone diagnosed with CF to sign up to the project. Tracking the health of people with CF over time is key to learning about where problems exist and how we can improve the care and well-being of people and families affected by CF in SA.
(Written by Alan Dunn, Chairperson of SACFA)
Click on the links to view the reports: