At the recent Clinical Advisory Panel meeting, a team of medical professionals established to provide expert advice on CF, the topic of gene retesting was raised.

As more precision medicines are developed that target specific faulty genes, it’s becoming increasingly important to know your genetic typing. From the PORT CF data we hold, we can see that not all CFers know their genetic type. 

Jan Tate, CF Nurse at Starship, recommends "I encourage all CFers to ask their consultants for another blood test when they have their annual blood taken. This can be done through the clinic you attend".

But say you think you know your type, why is it important to get retested?

"Most adults will have had their genes tested when they were infants when the CF gene panel was very limited. Since then many more CF genes have been identified. The CF panel has 50 common CF genes and the lab is now able to identify most CF genes". 

Knowing the genes you carry could open up opportunities for different or better treatments as time progresses. If you have any questions please contact your fieldworker or CF nurse.