Table 1

Measures to be administered during stage 2 (Validation) and stage 3 (Wearable Sensor Technology) of the study

Administered to:
MeasureKey informationIndividual with RTTIndividual with ASDHealthy subjectsParent/carer of child with RTT/*ASDParent/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:

  • frequency and manageability of seizures

  • respiratory abnormalities

  • scoliosis

  • ability to walk

  • hand use

  • speech

  • sleep hygiene

 X
 REST questionnaireA multidimensional questionnaire that can capture clinically meaningful data across the lifespan in individuals with RTT and improve treatment pathways X X X
 Wearable sensor technologyCaptures real-time biometric physiological data (heart rate variability, skin conductance, blood volume pressure, perspiration and temperature) X X X
 Anticipated administration time (minutes)303030~60~60~60

  • *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.