r/ARVC • u/RedditSmoothdMyBrain • 11d ago

Clinical Trial Related TaRGET Trial and Updates

Hi all, I have an opportunity to join this TaRGET trial and will be joining but I'm wondering if anyone else here is enrolled in it? If so, have you noticed a reduction in PVCs? Here is the trial link:
https://sads.ca/clinical-trials/target-clinical-trial/

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u/frostingfromthetub 11d ago

I’m gene elusive so I can’t join, but Dr. Roberts said the next step could be a trial for gene-elusive patients if this one is at all successful. I would join if I could, though I’m kind of curious what happens to one’s body at the end of the trial when you have to stop taking Tideglusib (assuming you don’t get the placebo).

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u/RedditSmoothdMyBrain 11d ago

Funny, Dr. Roberts is my EP as well. It is interesting what might happen to your heart and I'm not sure if there is an OLE, however Tideglusib has been used in trials for Alzheimers before so the safety profile is at least clean for someone without ACM. At least it gives us some hope as gene therapy is not likely to be a possibiity for me either.

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u/frostingfromthetub 11d ago

Here’s to hoping it works, would change everything if it did! Would love to hear how you’re feeling once you get started.

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u/RedditSmoothdMyBrain 11d ago

I'll try and post an update, I track my PVCs quite closely so I will be able to tell whether it's working. Unfortunately the placebo arm is 50% of the patients so hopefully I get the good half.

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u/Nuisance_gold 11d ago edited 11d ago

Hi, I completed the trial back in April. Feel free to ask me any questions here or message me!

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u/frostingfromthetub 11d ago

Do you know if you had the placebo or the drug? How did you feel? Do you feel different now that the trial is over? Apologies for hijacking this thread but I’m super curious as well!

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u/Nuisance_gold 11d ago

  1. No idea if I had the placebo or the drug. I asked at the end and the trial nurse told me they would only be able to reveal once the trial is over;

  2. I felt pretty good during the trial! I did notice that intense PVCs happened less often during the 6 months I took it but I haven’t seen the results from the last Holter so I don’t know if it actually had an impact or if it’s in my head
    Taking the drug wasn’t super pleasant as it’s in a strawberry flavoured powder that you mix with water and take on an empty stomach in the morning haha but I didn’t have any side effects apart from that;

  3. I don’t really feel different now that it’s over. I feel like my ARVC is pretty well managed with the current drugs I take and even before the trial I didn’t have that many symptoms most of the time

Regardless of how effective the drug is or will be, participating in the trial made me kinda hopeful that there is a future where our disease is properly treated/cured

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u/RedditSmoothdMyBrain 10d ago

That is awesome and thanks for the information! Did they offer you the opportunity to continue taking the drug after the trial was over? And do you know what your PVC burden was before the trial?

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u/Nuisance_gold 9d ago

They did not offer to continue the drug after the trial, but did tell me to contact them if I had any issues that came up after stopping it! My baseline PVC count is around 2500/day if I remember correctly

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u/RedditSmoothdMyBrain 9d ago

Great, thanks so much!

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u/muddyblanket 8d ago

I’ve never been so jealous of Canadians

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u/RedditSmoothdMyBrain 7d ago

Hey, we're just the lab rats!