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. 2017 Jun 21;7(6):e015342. doi: 10.1136/bmjopen-2016-015342

Table 1.

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

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:
  • frequency and manageability of seizures

  • respiratory abnormalities

  • scoliosis

  • ability to walk

  • hand use

  • speech

  • sleep hygiene

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.