For example, from a previous post I did in relation to anecdotal feedback from Ph3 P3 Lilac and Lavender
"Unfortunately as required the company has tightened its enforcement of confidentiality and reporting of Ph3 results on SM (as reasonably required) However, here is an example of some of the P3 anecdotal I have collected thus far:
Parent 1:
"We really thought XXXwas on the placebo, but then week 4 she started walking down the stairs along and getting into and out of my mini van. XXX does still gain skills normally so idk if we got the medicine or it's coincidence"
Parent 2 on open label trial after noticing no change during blinded trial:
"Since XXX has been receiving her trial mediciation we have notived some changes..she's more engaged, her motor skills are improving and her eye contact is amazing! The best part is we are only 4 weeks in!"
Parent 3:
"Brilliant news, I was unconvinced despite promising phase 2 results and a couple of rett parents singing its praises no end.Having seen its affects first hand in some of the girls in the phase 3 trial it can't come quick enough so anything that can give it that helping hand through the red tape is most welcomed""improved motor function, things children haven't done in years, bear weight, steps, hand to mouth feeding. Word in a couple of cases. We aren't talking a cure but some good smaller improvements that can help their qol."
https://hotcopper.com.au/threads/5854948/#post-50371245
Fair bet researchers and Acadia would have access to a lot more insight than everyone else.
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