Healey Trial - 2 Drugs Tested

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powerpadman

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Joined
Nov 30, 2023
Messages
26
Reason
Loved one DX
Diagnosis
11/2023
Country
US
State
WA
My brother, recently diagnosed with ALS, is going to get into the Healey Trial. Here's what they are currently testing. Anybody with experience with either of these drugs?

  • DNL343 (Regimen G)
    • Oral drug once daily taken with water or soft food
    • Optional lumbar puncture
    • 3:1 Active drug to placebo ratio
    • About 6 visits over 24 weeks in the placebo portion followed by an active treatment extension (ATE) where all participants receive the active drug.
  • ABBV-CLS-7262 (Regimen F)
    • Oral drug once daily taken with water
    • Required lumbar puncture
    • 3:1 Active drug to placebo ratio
    • About 6 visits over 24 weeks in the placebo portion followed by an active treatment extension (ATE) where all participants receive the active drug.
 
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I removed the word "emerging" from your post -- let's put that one to bed. I know you say one neuro used this term in the past, but if there were doubt about the dx, your brother would not have been made eligible for trials. We try to keep things clear for those still in the diagnostic process.

It is unlikely that too many here will have experience with either since the trials to date have been small. Both have promise based on very early work. But so far the studies have focused on a rough cut at safety and the molecule getting into the CSF, not on how well either might work against ALS. That answer is part of what the Healey program tries to uncover.
 
Thank you so much for your perspective and additional details. Seems to be far more upside than downside in moving forward with this trial opportunity.
 
if the site your brother is going to has both regimens active right now, I believe he will be randomized into one or the other, you cannot choose. That is what happened with my loved one with ALS who is now in G as of a couple months ago. Luckily both drugs seem to have similar goals, although the neurologist at our site mentioned they act in very different ways.
It’s best to look at a clinical trial as a selfless act as they are truly studying the drug for those 6 or so months.. I’m looking forward to when the placebo period is over so we can decide to enter the open label/ treatment extension or not. As for participation, time commitment has been relatively low so far with the longest appointment being the initial screen. Good luck, I hope your brother gets in!
 
I am enrolled in the Healey study in Winston-Salem. I am scheduled for my first appointment on March 6. I am hoping I don't get the placebo!
 
I was placed in regimen D, and participated in the optional lumbar punctures. I hoped to help with their research. Advice is to be well hydrated day before and day of and consume caffeine afterwards. I had a mild headache after first procedure, so the second time I drank a Coke sooner afterwards, did the trick, no headache at all. I am still taking open label Pridopidine, but since it has had some positive results, it is moving on to phase 3 testing. So I definitely encourage others to participate in trials, if possible.
 
Thank you for doing the lps Heather. The spinal fluid is vital for researchers. That is where they find biomarkers. Nfl which is now available as a blood test was first found in csf. When I was in a carrier study I was told my csf was more valuable to researchers than liquid gold.

I am glad you are on the ole and hope you are benefiting greatly
 
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