Kristina1
Senior member
- Joined
- Jan 26, 2017
- Messages
- 822
- Reason
- PALS
- Diagnosis
- 03/2017
- Country
- US
- State
- MA
- City
- Grafton
I'm in the 12 month open label phase of AMX0035. Open label phase is where everyone gets the real drug, regardless of what you were on during the double blind placebo controlled part of the study.
My 12 months open label ends in a April, but earlier this month they let us know they are extending it for an additional 20 months, with 5 visits spaced every 4 months.
I do feel this drug is helping me. For those interested I believe they are still recruiting, so you'd be able to start the trial (about 9 mos) then have 32 months of open label phase on the real drug.
ETA: Im now confused as to if it will be 16 months or 20 months...depends if the 5 visits include the 'end of the study' visit which it probably does so it's probably 16 not 20. but ill ask them for clarification!
My 12 months open label ends in a April, but earlier this month they let us know they are extending it for an additional 20 months, with 5 visits spaced every 4 months.
I do feel this drug is helping me. For those interested I believe they are still recruiting, so you'd be able to start the trial (about 9 mos) then have 32 months of open label phase on the real drug.
ETA: Im now confused as to if it will be 16 months or 20 months...depends if the 5 visits include the 'end of the study' visit which it probably does so it's probably 16 not 20. but ill ask them for clarification!
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