Table 1.
Administered to: | |||||||
Measure | Key information | Individual with RTT | Individual with ASD | Healthy subjects | Parent/carer of child with RTT/*ASD | Parent/carer/partner of adult with RTT/ASD* | Clinician/researcher |
Rett Natural History study32 | More than 1000 participants with RTT providing information on important aspects of disorder symptomatology | X | |||||
RSBQ38 | Provides an accurate measure of the behavioural features of RTT | X | X | ||||
RSSS42 | Provides information on the overall clinical severity and severity across individual parameters:
|
X | |||||
REST questionnaire | A multidimensional questionnaire that can capture clinically meaningful data across the lifespan in individuals with RTT and improve treatment pathways | X | X | X | |||
Wearable sensor technology | Captures real-time biometric physiological data (heart rate variability, skin conductance, blood volume pressure, perspiration and temperature) | X | X | X | |||
Anticipated administration time (minutes) | 30 | 30 | 30 | ~60 | ~60 | ~60 |
*Participants in the ASD cohort will be asked to complete only the relevant questions in the questionnaire battery that would be applicable and relevant to them
ASD, autism spectrum disorder; REST, Rett Evaluation of Symptoms and Treatments Questionnaire; RSBQ, Rett Syndrome Behavioural Questionnaire; RSSS, Rett Syndrome Severity Score; RTT, Rett syndrome.