Objective of the MECFA Patient Registry Working Group
MAIN OBJECT OF THE MECFA Registry committee:
The main object for which the Cystic Fibrosis Registry of MECFA is established is to provide and advance education by collecting and analyzing information relating to cystic fibrosis in the Middle East region.
It has long been suggested that CF is nearly non-existent in the non Caucasian population. This is contrary to the experience of clinicians practicing in the ME region.
It is widely accepted now that CF is not as uncommon as what it used to be believed. There are multiple reports from Kingdom of Saudia Arabia, Egypt, Turkey, Oman, UAE regarding the prevalence of CF in the region.
Through collaboration and pooling of data from different countries in the region, it will be possible to raise awareness about CF. Moreover, we are now entering an exciting phase in CF management which is the directed mutation specific therapy.
With the CF Registry, it will be possible for the first time to identify CF patients who will benefit from such therapies. It will also help the enrollment of such patients in future multicenter phase 3 trials, as more of these therapies are now coming through the pipeline. .It will also be used to facilitate research and provide accurate reports in order to monitor and improve treatments, which will contribute to the quality of care of persons with cystic fibrosis.
We propose to establish a network, under the auspices of MECFA Registry committee, in different countries in order to feed their patients date (completely anonymized) into the MECFA registry.
This will require extreme efforts to bring all the stakeholders in the region under one roof but we in MECFA are strong believers that it can be done once the benefits are clearly highlighted to our colleagues, clinicians in the region.