I received that E-mail from NAF

It was supposed to end soon but recruiting!

and especially for SCA 2 ???

I hope it can be a hope and want to get quick result.\

:thinking: If you search for the trial, and look down below ‘recruitment’, there’s a link to ‘expanded access’ which gives some information. Otherwise you could contact the trial organisers direct for information.

Study Type : Interventional (Clinical Trial)
Estimated Enrollment : 210 participants
Allocation: Randomized
Intervention Model: Parallel Assignment
Masking: Triple (Participant, Care Provider, Investigator)
Primary Purpose: Treatment
Official Title: A Phase III, Long-Term, Randomized, Double-blind, Placebo-controlled Trial of Troriluzole in Adult Subjects With Spinocerebellar Ataxia.
Actual Study Start Date : March 8, 2019
Estimated Primary Completion Date : October 31, 2020
Estimated Study Completion Date : October 31, 2020

Biohaven is expanding it’s study for 1 more year to show that Trigriluzole can slow the progression of SCA

:thinking:They expanded the trial for Troriluzole (formerly known as Trigriluzole) to include several types of SCA.

disappointing!! ㅜ.ㅜ Quickly!

Where can I apply? Thanks

What’s disappointing?

Any UK residents applying?

slower than I thought

Yes. It got me all excited there. I was even feeling better for a moment.

:smirk: Someone on healthunlocked received this reply…so we’ll just have to wait until there are UK studies.

‘This study does accept international applicants - however, it also requires each participant be able to attend every study visit in person. There are 17 in-person visits total over a 24 month period. Is this feasible for you?’

I had the feeling it would be the case. We’ll just have to cross fingers and hope for the best.

I had been with the same drug for almost 2 years. My last visit is on January 6th, 2020 They just extended the study for 1 more year to show that Trigriluzole (BHV-4157) slows the progression of the disease. Although I have not seen any difference, statistical analysis shows it may slow down the progression. Since I live in Norfolk, VA and Biohaven is paying for me and my wife’s flight and stay 1 night in Baltimore, MD, I have accepted the offer. It allows me to see my neurologist at Johns Hopkins and allow me to stay abreast of the disease. I am not too excited about Trigriluzole. So you are not missing anything by not being in the study.

You’re not too excited you say, but don’t you think you are on the placebo? … maybe?

I think I might had been on the placebo first 3 months. It had been 2 years now. The randomization ended after the first few months. I am on the real thing for more then a year. I have not seen any noticeable changes.

I’m really sorry to hear that. So, it doesn’t work for everybody? you’re still feeling a progression?

:thinking: I’m just wondering. Will you stay in the study when the formulation changes to Troriluzole.

To my knowledge, the formulation of Trigriluzole and Troriluzole are the same. It is the the prodrug for Riluzole. BHV-4157 is a prodrug formulation of riluzole, a medication used to treat amyotrophic lateral sclerosis. Following oral administration, aminopeptidases in the blood release riluzole from a tripeptide carrier. Unlike riluzole, which must be taken twice a day on an empty stomach, this prodrug requires only once-daily dosing and is unaffected by food.

Riluzole inhibits voltage-dependent sodium channels and reduces synaptic glutamate by increasing its uptake and inhibiting its release. Glutamate dysfunction is a feature of Alzheimer’s disease. Studies in AD mouse models indicate protection from AD-related pathology and cognitive dysfunction by riluzole (Okamoto et al., 2018; Hunsberger et al., 2015). In rats, riluzole was reported to prevent age-related changes in gene expression similar to those seen in AD (Pereira et al., 2017).
And yes, I plan to continue with the study.

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