I still don't know how I feel about NTI presenting the CGI-I results using only 4 out of the 9 anchors they tested. The actual results are included in the summary but not on slide 22.
I would like to see the results for hand use and ambulation in particular. Does anyone know where I can access this? (Or if this was measured at all?)Rett Specific Anchors for the CGI- (Table 2)I :Improving Treatment Trial Outcomes for Rett Syndrome: the development of Rett-specific anchors for the Clinical Global Impression Scale - PMC (nih.gov)
Rett Syndrome Symptoms: Rett Syndrome | National Institute of Neurological Disorders and Stroke (nih.gov)Motor function (particularly hand use) is one of the most important things to measure when assessing the efficacy of a treatment. All sources seem to indicate this. If you are going to select 4 anchors, ambulation or hand use would be far more useful than Anxiety which is considered a secondary item. It is much easier to objectively measure with an OT.
Other sources: IRSF What is Rett Syndrome? - International Rett Syndrome Foundation
Mayo Clinic: Rett syndrome - Symptoms & causes - Mayo Clinic
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