A paper titled
Epidemiology and patient journey of Rett syndrome in the United States: a real-world evidence study was published in April in
BMC Neurology.
The study was conducted by analysts from Analysis Group Inc. (Boston, MA) and funded by Acadia.This study assessed the Rett patient population in the United States based on de-identified administrative healthcare claims data from 2016 to 2019 and using the RTT diagnosis code.
The study identified 5,940 eligible female Rett patients in the United States (paediatric: 3,078; adult: 2,862) , with a mean age of 20 years. A further 1320 males living with Rett syndrome were also identified but were not included in the study analysis.
That suggests ~7260 diagnosed Rett syndrome patients in the US all up.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10071755/
(20min delay)