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    • #20408

      In March 2019, Biogen launched a Phase 3 clinical trial. Called VALOR, the study enrolled 178 people with SOD1-ALS, who received an undisclosed, fixed dose of BIIB067 or placebo for 28 weeks.

      The trial was conducted at 31 sites in North America, Europe, Australia, and Japan, and finish in July 2021.

      Currently there is no news for this study on clinicaltrial.gov.

      yet it seems a new phase III with 150 participants was started in April 2021 (NCT04856982) ???

    • #20423
      Les Wood
      Participant

      I have been on the sod 1 Tofersen trial for almost five years the first person in the U.K. possibly Europe to have it I’m doing ok I was diagnosed in August 2012 my next treatment is tomorrow at Sheffield Hallamshire Hospital

    • #20424
      Les Wood
      Participant

      I have been on the sod 1 Tofersen trial for almost five years the first person in the U.K. possibly Europe to have it I’m doing ok I was diagnosed in August 2012 my next treatment is tomorrow at Sheffield Hallamshire Hospital

      • #20473
        Geison
        Participant

        Hello,
        I have the proposal to start with medication this year, this is solving the bureaucratic issues. You could share with us your experience/results with using tofersen.
        thanks

    • #20425

      Many thanks for the answer Les!
      First person in UK, possibly in Europe? This is very impressive!

    • #20433
      Amanda
      Keymaster

      Jean-Pierre – is this part of the same study? https://clinicaltrials.gov/ct2/show/NCT02623699

      This study, along with the other Tofferson studies, is part of what the University of Miami Pre-fALS study is involved in. There are many other sites (as mentioned in the ling) that also participate in the US and Europe.

      • #20434

        Yes, thanks Amanda,
        The link tells “The study completed on 15 Jul 2021” and that there are no posted results.
        I can’t find any news on internet.

        • #20440
          Andrew UK
          Participant

          I was speaking to Sheffield Uni this week and it was muted that an open access arrangement may be started next year prioritising more rapidly progressing patients. I will be having another conversation in Jan 2022 so will know more then

        • #20441
          Andrew UK
          Participant

          I was speaking to Sheffield Uni this week and it was muted that an open access arrangement may be started next year prioritising more rapidly progressing patients. I will be having another conversation in Jan 2022 so will know more then

        • #20447

          Thanks Andrew,

          > open access arrangement may be started next year prioritising more rapidly progressing patients.

          It’s a nice information!

    • #20472
      Geison
      Participant

      Hello,
      My name is Geison, I’m Brazilian, my family is affected by ALS family type with genetic error in SOD1. I received the diagnosis last year, the doctor who accompanies me has the proposal to start with medication this year, this is solving the bureaucratic issues. I will leave the biogen website that reports con entering the study. https://www.biogen.com/en_us/als-community-update.html

      • #20500
        Angelo Venosa
        Participant

        Olá, Geison

        bom saber que um brasileiro está tendo acesso a esse ensaio clínico.

        sou portador de ELA esporádica, vivo no Rio de Janeiro.

         

        Hi, Geison

        Good to know that a Brazilian is getting access to this clinical trial. I’m a sporadic PALS living in Rio.

    • #20491
      Gigi
      Participant

      You are correct Phase III of the Biogen Tofersen Trial ended in July of this year.  In April an extension of the Trial started for those patients who had already participated in the Trial, and wanted to participate, where everyone would now be getting Tofersen, even those previously receiving the placebo

      In addition Biogen has now just started a new Clinical Trial for people with fast progressing SOD1 ALS who are not symptomatic.

      Results have not been released yet.

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