Pulmonary Fibrosis News Forums Forums Welcome Lounge AND… I found one more… early, but interesting they call it potential CURE

  • carlo-de-pellegrin

    Member
    December 22, 2022 at 11:10 am

    How do we find out more ?

  • anonymous

    Member
    December 22, 2022 at 12:45 pm

    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.

     

     

  • jofac-ohandlin

    Member
    December 22, 2022 at 5:07 pm

    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

  • jofac-ohandlin

    Member
    December 22, 2022 at 5:07 pm

    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

  • anonymous

    Member
    December 24, 2022 at 5:33 pm

    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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