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runncoach

02/09/23 12:45 PM

#402454 RE: Doc328 #402447

Doc, I think once the trofinetide trial went OLE they were able to remove the meds being taken for constipation and alter the diet and from what I have read its modified the original side effects and allowed for increased improvements as time on treatment been extended. So far Acadia hasn't given guidance as to their drug pricing but so happy that in all likelihood patients will have an approved option this spring. Also interested to see if they allow scripts down to 2 years as the OLE has allowed. Hopefully 273 can be used on top of this somewhere down the line. GLTA
https://medicine.wustl.edu/news/pediatric-clinic-for-rett-syndrome-draws-patients-for-multispecialty-care-clinical-trials/