Trial for new epilepsy med

Hi, @cathy5161 - wondering if you're speaking about this published study in the journal Neurology:

- Updates from the First-in-human Phase 1 Clinical Trial Evaluating the Safety, Tolerability, Pharmacokinetics and Food Effect of Vormatrigine in Healthy Participants (P11-4.006) https://www.neurology.org/doi/10.1212/WNL.0000000000212741

To some extent, yes. However my understanding is that the first two trials (called Power 1 and 2) have been stopped or on hold for the time being, and Praxis is prioritizing this new phase (called Radiance) which is a small eligible cohort who will all be given 30 mg for a period of 10 to 14 weeks, very closely monitored. Hence my term of guinea pigs.

Didn't escape me that all authors of article you sent are heavily involved in or with Praxis.....

@cathy5161 I have not heard of this study. If you decide to do it, let us know how and what the process is like I would be interested in knowing as I am medicine resistant. I am always looking for alternative ways. Thanks for the information.

Have to commit tomorrow. I am also medication resistent, both for epilepsy and a rare neurological autoimmune disease. Will let you know.

Thank you @cathy5161 for sharing that with us. I am also medicine-resistant and willing to know more about it.
Chris (@santosha)

Praxis must want this done pretty badly. Just got off a 2.5 hour call with site coordinator. First had to sign a 20 page consent form, go through my medical history and meds, set up an app for an every day seizure diary, and request my records separately from 4 of my doctors (despite Praxis already requesting and having every medical file I had). The good part is I get $75 for every visit, and I can do the whole thing via home health doctors/nurses...for free. All transportation costs are also covered..
The first visit is an assessment if they think I even qualify. If so (and that may be a bit of a long shot given other quirky and rare neurological/ autoimmune issues), they will set up at least 4 more visits, and an end-of-study visit. So study is divided into the initial screening, which can last up to 4 weeks, study treatments with the new med that lasts 8 weeks, and an EOS visit. So looking at a total of 14 weeks.

if you have at least 2 focal onset seizures/month or 4 for tonic-clonic seizures, Praxis may still be recruiting. Big decision I know, and not without its risks, but if anyone wants to discuss one on one, let me know.

Does anyone have a link on how to contact Praxis for participation eligibility?

James

Hi @cathy5161
Today, I came across this article: Common genetic variants linked to drug-resistant epilepsy.
@closetmonster93, I believe this article also interests you.
Here is the link:
https://medicalxpress.com/news/2025-04-common-genetic-variants-linked-drug.html#google_vignette
Chris (@santosha)