• Charlene Marshall

    Member
    November 6, 2020 at 12:51 pm

    Hi @geoff,

    So great to hear this, thanks for sharing! I’m really glad the medications aren’t causing you any unpleasant side effects and that the HRCT results are good. I’ll keep my fingers crossed this remains for you, wonderful news. Hello from Canada to one of my favourite places in the world…. Sydney! 🙂
    Char.

  • Pete Besio

    Member
    November 6, 2020 at 3:23 pm

    Per an email exchange with my Galapagos Clinical Research Coordinator today:

    The “arm” that I am participating in (NCT03733444) recently enrolled its 750th and final patient recently, so I will continue in the study until the 750th patient completes THEIR 52 weeks in the study. Galapagos intends to roll over participants into the open label extension of the study.  This extension does NOT include the placebo.  Galapagos has applied for this open label extension, but due to COVID, this submission to the FDA has been delayed. So for now I have about 52 weeks left in the study.

    The clinic I am working with has recently been approved to enroll patients in the other “arm” (NCT03711162).  There are 300 spots still available.  Prospective patients can be taking OFEV, Esbriet, or no standard of treatment to participate.  If you are near Tampa and are interested in participating, I will be happy to provide contact info for the clinic.  I am  impressed with them.

    Other part of the US, there are 117 study locations listed in the information for the trial here:

    https://www.clinicaltrials.gov/ct2/show/NCT03711162?recrs=a&cond=IPF&cntry=US&draw=2&rank=36

  • Geoff

    Member
    November 6, 2020 at 5:39 pm

    Thanks Char.  I have visited Toronto twice over the years. Many many similarities to our way of life in Oz. Loved it. The top for me in Canada has to be Quebec Once only visit for a week, but, ooh la la.  Probably because we lived in UK for about 12 years and had many holidays in Europe where the history etc entranced me. Have been back most years.

    Getting a bit sick of THE Election. We get blanket coverage here. aaghhhhhhh.

    Best wishes

    Geoff.

  • Charlene Marshall

    Member
    November 7, 2020 at 9:54 am

    Hi Geoff,

    Yes, I agree with you and felt many similarities between life in Toronto and Sydney, in particular but between Canada and Australia in general. I love Oz and can’t wait to go back! Quebec is beautiful, I went to Quebec City last year for a conference and loved the old architecture and stunning views into the mountains. Beautiful spot! Have you ever done western Canada, like Alberta or BC? Also a fave spot of mine, but of course I am bias 🙂 I loved visiting SA (Adelaide), Vic (Melbourne and area, including Yarra Valley, Croydon, Fingal/Peninsula area, etc) and NSW including Sydney, and all around the north shore trails, up the Blue Mountains. It was just amazing!

    Enjoy your weekend.
    Char.

  • Charlene Marshall

    Member
    November 7, 2020 at 10:03 am

    Thanks so much for this information @pbesio! I have no doubt others will find this informative and helpful. It was 1 year ago today that I flew to Texas for the PFF Summit and had the chance to talk to the team at Galapagos, as they were there in the vendor displays. Hard to believe, how the world has changed in just one year… stay well!
    Char.

  • Charlene Marshall

    Member
    November 7, 2020 at 10:05 am

    I’m so glad you’re finding the site helpful Richard! Thanks for sharing, and giving us an update on the trial. Pete also mentioned he has another 52 weeks on the trial, based on the “arm” of the study he’s in and Galapagos just enrolling the 750th (and last) patient in that trial to start the meds. I’m really hoping this study yields some hopeful results for all of us! Thanks for sharing your experience, and I’m glad to hear things are going pretty well for you with it. Stay well!
    Char.

  • Charlene Marshall

    Member
    November 7, 2020 at 10:14 am

    Thanks so much for sharing Bill, I’m so glad you’re comfortable with the protocols Yale has put in place amid the pandemic. That is really reassuring, I agree. I’ll keep my fingers crossed that the experience you’re having with the trial continues to go well, and that recruitment/enrolling continues! Thanks for writing, Char

  • Charlene Marshall

    Member
    November 7, 2020 at 10:44 am

    You’re too kind @richardsc! @mark-koziol and I feel so privileged to be moderators on this site, and interact with some many helpful, courageous and kind individuals willing to help one another through this cruel disease. What a day we’ll all have celebrating when a cure is found for this disease! Hugs to you 🙂

  • Mark Koziol

    Member
    November 7, 2020 at 11:18 am

    Thank you Carol for your kind words. I’m sorry I didn’t respond sooner. I’ve been sort of out of commission. Looking to get back into the swing of things this coming week. Charlene thank you for being an excellent mentor and guiding me in this endeavor. Mark

  • Carol Richards

    Member
    November 8, 2020 at 5:30 pm

    Believe me, I am not too kind.  You are both priceless!  Thank you for responding.  Take care!

     

  • Charlene Marshall

    Member
    November 10, 2020 at 8:05 pm

    ♥ ♥ ♥

    you too Carol! Stay safe!
    Char.

  • David Spaeth

    Member
    February 11, 2021 at 11:44 am

    I got the word yesterday – GLPG1690-CL-304 trial has been discontinued, I’m to turn in all supplied medication and the diary.

  • Pete Besio

    Member
    February 11, 2021 at 11:48 am

    Yep, i got the same call.  I will be meeting with my trials nurse on Monday, if I learn anything of value I will post it here.

  • Richard Phillips

    Member
    February 11, 2021 at 1:03 pm

    I also got the call. Will meet with coordinator next week. She informed me
    that a new study that started in January and they are recruiting new people
    to join at this time. There will only be 650 participants.The trial is in
    the third phase. Google WA 42293 by Roche for information on the trial

    Gatorrichard

  • Suzanne R Brennan

    Member
    February 11, 2021 at 3:03 pm

    I had been in this trial since May 2019. Yesterday trial participants were notified that the trial has been cancelled effective immediately. Not much yet in the way of details but hopefully we will get some explanation in the coming days as to why.

  • Richard Phillips

    Member
    February 11, 2021 at 3:29 pm

    Google GLPG1690 Clinical Trial this will tell you why the
    Trial was cancelled.

  • Randy

    Member
    February 11, 2021 at 5:59 pm

    Hello Charlene and everyone on the blog today. If you remember, I have told you about my experience this past year. It will be 1 years come March that I was diagnosed with IPF. I am not taking the 2 approved drugs because from everything I have read here and thru other studies. I don’t need the side effect along with the other problems I have with my heart. But I have been doing a lot of studying on all the drugs are being tested. GLPG1690 was one that should good results and none of the side effects. It was suppose to be ready this years. Is that still on schedule or has it been moved back? There are over 20 drugs in tests and now that more money is being put forth, more are being tested. I hope they have one of those soon as I would like to live a little longer. Do you remember the lady who was going to get into a test and write me about the drug to see what I knew? She never did. Hope she is doing good.  Well, that is my thoughts for tonight. Everyone have a good evening and stay safe.

     

     

  • Pete Besio

    Member
    February 12, 2021 at 6:30 am

    @rthorntonbresnan-net

    HI Randy,

    See the messages above.  I was a participant in GLPG 1690, as were a number of forum members.  It has been cancelled. Some info here:

    Galapagos and Gilead Discontinue ISABELA Phase 3 Trials in IPF | Business Wire

    I have my exit screening scheduled for Monday, I will post if I learn anything.

    Pete Besio

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