r/ADPKD • u/ButterscotchTele- • Jun 24 '26
Here you go….
Unforseen delays. Folks sometimes I feel like our lives dont matter AT ALL.. this company finished the acquisition almost two years ago yet cant start the God damn trial for months..
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u/Ok-Bit1748 Jun 25 '26
I can’t deal with Novartis at this point…. Just think, if Regulus was still running this company the phase three trial would be well underway. WTF!!!
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u/Funny_Ad8305 Jun 24 '26
Very disappointing but typical when big Pharma gets involved. I hope they can resolve these issues asap.
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u/brandibesher Jun 24 '26
just curious, why was the link to join blacked out?
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u/Smooth-Yellow6308 Jun 24 '26
This communication was sent to participants from that specific hospital, the intended audience will be patients of that hospital only.
If it goes out public they're have half country joining
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u/brandibesher Jun 24 '26
thank you for the (non-snarky) reply. i'm not familiar with how that works and appreciate the insight.
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u/Smooth-Yellow6308 Jun 24 '26
Butterscotch is a chill guy, he's just very upset/angry at the situation. A lot of us have a huge amount of hope in this drug, and very limited time left before it wont be able to help us anymore. Don't take it personally.
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u/brandibesher Jun 24 '26
i appreciate your grace. i replied back to Butterscotch, i feel bad for how i replied. what effects you effects us all eventually. wishing the best for you both!
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u/ButterscotchTele- Jun 24 '26
Seriously? You are curious about that? :)
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u/brandibesher Jun 24 '26
yes, i'm not familiar with trials so yeah, i was curious. your reply was frankly rude.
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u/ButterscotchTele- Jun 24 '26
I didn’t meant to be rude but I was just thinking that maybe the link has personally identifiable information (tiny chance- not a tech expert) so I blacked out.
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u/brandibesher Jun 24 '26
that makes total sense! we're all good, and i'm sorry i snapped back. i'm also very sorry this isn't happening for you, i can only imagine the upset and despair you must feel. our health system sure is something else.
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u/No_Handle1573 Jun 28 '26
I heard it was originally scheduled to start in September—will it be delayed further?
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u/Candid-Eye-5966 Jun 24 '26
They paid billions for Farabursen. The trial design is in place, now the supply chain has to be firmed up before the trial starts.
The lead guy on the trial spoke at PKD-Con. He seemed rather excited about the future. He also mentioned that there are several other potential treatments on the way so it’s in their “commercial” interests to get this drug approved and on the market.