Clinical Trials

[KevinM]

Hi my forum friends. I was wondering how many of you are currently participating in clinical trials, and if so, are you seeing any positive results? I understand you may be limited in the amount of info you can share because of NDA’s, but I’d love to hear from anyone. Thanks, Kevin

 

[RandomMom]

Hi Kevin –

I’m in the Healey Platform trial – regimen d which is pridopidine. I will know in 4 weeks if I am getting the drug or placebo. We think I may be getting the drug as I experience dizzy spells now when I stand up – a known side effect. I’ll continue in the open label part of the study once the 24 weeks are up.

I am a slow progresser so it’s hard to know if it's helping, but I have not had any significant changes in the past 6 months. Happy to answer more questions if you are interested.

 

[KevinM]

Thanks so much for responding! I was wondering if anyone on the forum was currently in a trial. I’m very happy to hear that you have not had any significant changes over the past six months.

I too am a slow progressor, to the point that my neurologist said I probably won’t qualify for trials because they would have great difficulty determining efficacy, since my FRS-R is still near normal. Having been diagnosed more than two years ago, along with my age (64) works against me as well.

I really hope that research to identify biomarkers has a breakthrough, because the FRS-R is woefully inadequate as a measuring tool. Thanks again, Kevin

 

[Dvholmes]

I’m SOD1 rapid progression. I’ve been taking part in the Tofersen trial with ASO for 11 months. It’s working to slow progression but hasn’t stopped it.

 

[Babycakes]

I got an email the other day about Dr. Bedlack finally starting the Theracurmin study. I got booted because I’m in the Edaverone oral extension trial (which is easy and I tolerate it well and I hope they approve it soon and ditch the IV infusions).
Also, I’m keeping tabs on Project ALS and they put out a note that they are closer to starting enrollment for Phase 1 for Prosetin. I’m hopeful about Prosetin

 

[Krismat]

Hi Kevin. I'm a CALS, but my partner is part of the Healey Platform Study and is on Verdiperstat. But he's kind of superstitious and is convinced he is in the 25% getting the placebo. He'll be able to access the real drug in early December once his time in the study is over. The drug looks promising, but it's hard to tell if it's helping or not. He continues to lose weight which worries me, and his muscle/coordination loss seems to still be progressing. However, his voice, swallowing, and breathing all still seem okay. It's really hard on him not knowing and for him to try and keep the faith.

 

[MToole]

thank you for the update