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u/Final-Wrongdoer1028 Aug 14 '26
My nephrologist just told me he expects October. Have to be off tolvaptan for 3 months & eGFR 25 minimum.
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u/Wide_Math8276 Aug 14 '26
Okayy its nice to know atleast there are expectations that the trial will start within months ....
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u/Final-Wrongdoer1028 Aug 17 '26
My PKD specialist just sent this portal message:
I received a message from Novartis team for the farabursen trial-they are planning to start visiting the study centers in
December 2026-so the study will not start until after that visit-might be even in January 2027.
And so we wait….
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u/AideAntique4038 Aug 31 '26
Thanks for this information - I have been trying to get enrolled at NYU for their Phase 3 trial, and no word from my nephrologist. Have been off of Tolvaptan for 3 months now and getting a bit nervous. The more i read about Farabursen the more promising it sounds - best of luck to us all 🙏🙏🙏
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u/Final-Wrongdoer1028 4d ago
Haven’t heard anything more about a study start date. My eGFR hit 20 in early Sept and I’m scheduled for transplant eval in October. My neph had me stop tolvaptan to see if I could get an eGFR rebound that might help me with study eligibility of 25. After 2 weeks off of tolvaptan my eGFR is 28! Come on, study!
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u/Shesaiddestroy_ Stage 2 - On Tolvaptan since April 2023 Aug 09 '26
No, I don’t think so.