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    • #33946
      Chris
      Participant

        “Health scientists in Leicester and Nottingham have discovered a gene which could lead to a cure for idiopathic pulmonary fibrosis.”

        I learned in school 12 years ago that at that time the only gene therapy was to halt cystic fibrosis. That isnt a cure but a VERY effective treatment. Sounds like this one is also getting after the fibrotic process at the gene level.

        Gene research breakthrough to treat fatal lung disease – Nottingham Biomedical Research Centre (nihr.ac.uk)

      • #33950
        Carlo De Pellegrin
        Participant

          How do we find out more ?

        • #33951
          Chris
          Participant

            This one I found out was published in 2017, and cant find more as yet. I think this is a longer way off but it does appear they may have found a gene – AKAP13 -that directly contributes to fibrosis, and other research is working on a way to shut that down. When I was in school years ago, they told us that the only gene therapy in use was to halt cystic fibrosis. They said it was a missing gene in lung tissue, and there was an inhaler with RNA that the patient used biweekly, and it mostly stopped the progression. This is mostly from memory as I recall.  When I read this, I was thinking they MIGHT be on to something but didnt notice the 2017 date.

            So, I’m more excited about the new drug now in phase 3 trials, see my other post on that.

            In any case, there is NO doubt that researchers are closing in on this. Just not sure the timeframe. In fact my Pulmo told me this is a disease under research.

             

             

          • #33954
            Jofac O’Handlin
            Participant

              Hi Chris, Your post is most interesting. I feel almost certain of the gene mutation / aberation as my sister 11 years my senior died of the complaint at the age of 85. Possibly our grand father on my mothers side died prematurely aged 41 of an undefined lung condition.
              An article that I read referred to the MUC5B mutation as a possible trigger. Your reference to the AKAP13 gene is interesting.
              I would be most interested in getting gene testing focusing on the IPF associations, but which labs?
              Could you provide the links to the phase 3 trials that you refer to?
              Cheers, Joe

            • #33955
              Jofac O’Handlin
              Participant

                Hi Chris, Your post is most interesting. I feel almost certain of the gene mutation / aberation as my sister 11 years my senior died of the complaint at the age of 85. Possibly our grand father on my mothers side died prematurely aged 41 of an undefined lung condition.
                An article that I read referred to the MUC5B mutation as a possible trigger. Your reference to the AKAP13 gene is interesting.
                I would be most interested in getting gene testing focusing on the IPF associations, but which labs?
                Could you provide the links to the phase 3 trials that you refer to?
                Cheers, Joe

              • #33956
                Chris
                Participant

                  This gene development doesnt look like it went anywhere since 2017. Maybe in research it’s helping. Not sure.

                  It’s the OTHER post about a new med BI 1015550  that is now in Phase 3 trials. Here’s the link:

                  New Treatment in Phase 3 looks like it might be promising – Pulmonary Fibrosis News Forums

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