Old 01-06-2019, 05:48 AM #1 (permalink)
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Default Arimoclomol

Hello,

My father is considering applying for the Arimoclomol Phase III study in Madrid. Since we are new to this, I had some questions:

1) How promising has Arimoclomol been? Browsing, I was surprised to find that an earlier trial was done 10 years ago (!). Is that timing normal? Why so long between the two?

2) Would you think that it is worth traveling to another city to participate?

I know they are hard questions but would appreciate some guidance in the dark.

Best,
E.
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Old 01-06-2019, 05:59 AM #2 (permalink)
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Default Re: Arimoclomol

There was a much more recent trial. It was in sod1 ALS and had some encouraging results

Here is the paper published last year Randomized, double-blind, placebo-controlled trial of arimoclomol in rapidly progressive SOD1 ALS | Neurology

Does your dad meet the criteria? It looks like they are strict El Escorial
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Old 01-06-2019, 06:03 AM #3 (permalink)
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Default Re: Arimoclomol

Thank you for answering.

I am not sure, but we might as well give it a try. They are asking only for clinically possible according to El Escorial, not probable, so I think our neurologist could make the case.

Do you know how regularly one is supposed to attend the medical center? It was unclear to me looking at the instructions.

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Old 01-06-2019, 06:20 AM #4 (permalink)
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Default Re: Arimoclomol

Clinically possible means meeting El escorial in one body area ( such as legs, arms or bulbar). Probable is 2 areas, definite 3.

I don’t know the frequency. I do know people traveled for the sod1 trial
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