Viking trial

[Equinney]

I am scheduled to fly out on Jan 3rd to UofF to be tested for the Viking trial. Don’t know if anyone else has heard back from test sites or not. Or have you already been tested for the trial?

[bluejadedwho]

I have never heard of this trial. What does it involve?

[Equinney in reply to bluejadedwho]

This is what they are hoping for with outcome. It is a very short trial, 28 days, somewhat is just to see what side effects there are. It has been tested on healthy people already. The information is at clinical trials.gov if you’re wanting more about it and contacts.

Viking trial outlook

[mariagno]

I have heard nothing. It reduces plasma VLCFA's?

That could help with further damage and damage to nerves that could possibly be regenerated like peripheral nerves.

Do I have that right???

[Equinney in reply to mariagno]

Pretty much, this is just a 28 day trial to see if any results there, and to see if/what side effects there are. They did a run on healthy people already testing side effects. Hopefully will pass through and be able to do a longer trial for efficacy of it.

[wilburlois15 in reply to Equinney]

fascinating, but this is just the start of the journey. They've reduced blood VLCFAs before (Lorenzo Oil) but that didn't impact symptoms and prevent progression. So I guess once they've (hopefully) established blood VLCFA reduction then there will be a long trial (2yrs+) to establish what happens to symptoms/progression.

[SongStream in reply to wilburlois15]

If one is already symptomatic, it will not reverse existing symptoms but hopefully it will be an earlier medication for pre symptomatic AMN patients (like Min-102) once a natal screening blood panel tests indicate ALD. Also, those who have had a bone marrow transplant, it may not cure a future AMN diagnosis. That is another important study.

[Catrick in reply to Equinney]

Are any women included in the trial?

[Equinney in reply to Catrick]

There are not. This is stage 1 which basically is to see what side effects there are if any. They’ve had a run on healthy people, now to men with it. They are checking vlcfa levels to see if there is any change in the short time. Sadly women get left out of a lot of trials.

[3WheelWonder]

University of Florida?

[Equinney in reply to 3WheelWonder]

Yes. There are other sites listed also for testing.