Interesting data today no doubt.
800 patients with a retention rate of about 81% after 4 months.
It's not unrealistic to eventually get 75% of the estimated 6000 patients equating to 4500 patients.
I have a feeling the retention rate will settle at around 75% meaning over 3000 long term patients in the USA taking the figure comfortably over US$1b Maybe in 24 months??
There is no doubt some people are still struggling with side affects and some simply don't see change, but for the majority it's seems to be going well.
One thing I can gather from feedback, that Acadia may not be factoring in, is that discontinued patients may eventually try again. Some say they will wait until more refined GI protocols are established or simply give their child a break. So that 19% may not be a 'forever' 19%
But back to what we love and this one has potential to be special
A post about a girl aged 2 and a half.
Everyone is very optimistic and has high hopes for her future with her starting DayBue so early! We have seen improvements since she’s started DayBue so we are very hopeful also.
They do believe that regression was starting to take place especially with her hands and arms. However since she’s started DayBue, we hope/believe it has stopped. We do not know if she ever has to stop taking DayBue if she regress or stay where she’s at but hopefully that’s not something we will have to worry with. They do feel that DayBue will be a forever medication for her.
Whilst every change to older patients is a miracle, here is a 2 1/2 year old girl at the start of Rett regression who may have Rett symptoms actually prevented from developing. A true miracle.
Now to what degree it stops the development will be fascinating and amazing and will be a significant story for future cases of infant diagnosis and a whole new direction for the Rett condition and a whole new outlook for families dealing with Rett diagnoses.
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