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    • #15904
      Amanda
      Keymaster

      Do you keep up with medical research and clinical trials for pALS? I find that research on biomarkers and genetic links to be interesting and I believe that this is the path to finding a cure. What are your thoughts? What research do you think is the most promising?

    • #15930
      David Crellin
      Participant

      Hi,I do indeed keep up with clinical research – I only wish my consultant was as informed! It helps to have two friends of my sons working in gene therapy research and one other just graduated from Oxford with a PhD in Neuroscience.
      In addition to biomarkers and genetic links, the research into benefits of already approved drugs looks interesting. I have C9fALS, so trials into Metformin and C9ALS, as well as MN-166, AMX0035 interest me.

      I note that Ionis/Biogen, Wave Life Sciences and UniQure are all developing genetic therapies using viral carriers. The hope is that once the safety of the carrier mechanism is approved, approval of variations of the genetic therapy should be expedited. But I frequently ask myself why clinical trials need to take so long. I worked in business improvement, working with staff at all levels to develop tools for their use in making processes work, cutting out handovers, log jams. I wonder whether this continuous improvement philosophy is applied in trials. I know it is in pharmas, because I’ve seen it in practice in GSK. I’m free if anyone is interested, and can still travel!

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