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As a patient living with idiopathic pulmonary fibrosis (IPF) for nearly four years, Charlene Marshall hopes that the research being conducted around the world not only helps find a cure for this disease, but helps new treatments emerge that will improve patients quality of life. Understanding gene variants and their role in fibrosis development sounds like a promising approach to further understanding IPF and enabling better treatments for patients.
As a patient living with IPF/PF, do the various studies and clinical research make you hopeful that a cure or new treatment to better manage IPF will soon emerge?
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Gene variations or mutations involved in IPF.
In the UK when one signs up to permit any samples taken to be used in research, you fail to understand that you will not get any personalised feed back. The only information received will be that pertinant to your treatment. So, monitoring the progression, and the prescribing (in my case one of the 2) treatments namely OFEV.
Your samples become anonymous so there is no information feedback.
As I am entering the end game, having survived 9 years from diagnosis, and having had an older sister die from IPF, I now feel a strong desire to find out if I have any of the several genetic mutations linked with this disease.
I have seen comments in the various forums on the mutations linked to our disease, but admit failing to take note of them. What I would like help with is, where can I find such a list, and which genetic testing organisations would provide me with the best testing regime / results?
You guidance would be appreciated.
My good wishes ot all,
Joe
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