For example, low-quality outcome measures have been blamed, in part, for the recent failure of drug trials in fragile X syndrome ( Erickson et al., 2017), and federal agencies have released specific funding announcements focused on outcome measure development for these populations (e.g., NIH PAR 18-039 “Outcome Measures for Use in Treatment Trials of Individuals with IDD”). Missing data rates were low for video frames (3%) and vocalization recordings (6%) but were higher for heart rate (25% fully missing and 13% partially missing) and discrete behavioral presses (8% technical issues and 19% not enough codable behavior), reflecting the increased technical demands for these activities.Ĭonclusion: With further development, low-cost laboratory-grade research protocols may be remotely administered by caregivers in the family home, opening a new frontier for cost-efficient, scalable assessment studies for children with NGS other neurodevelopmental disorders.Īccurately assessing developmental skills in children with NGS has become a pressing need given recent advances in clinical trials and the lack of appropriate outcome measures suitable for children with IDD ( Budimirovic et al., 2017 Grieco et al., 2019). Results: PANDABox required low resources to administer and was well received by families, with high caregiver fidelity (94%) and infant engagement (91%), as well as high caregiver-reported satisfaction (97% positive).
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Behavioral and physiological data were synchronized and coded offline by trained research assistants. Tasks assessed attention, language, motor, and atypical behaviors.
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Methods: We administered PANDABox to a cohort of 16 geographically diverse caregivers and their infants with Down syndrome. Here, we describe PANDABox development and report preliminary data regarding: (1) logistics and cost, (2) caregiver fidelity and satisfaction, and (3) data quality. To address this challenge, we developed PANDABox (Parent-Administered Neurodevelopmental Assessment), a caregiver-facilitated, remotely administered assessment protocol for collecting integrated and high quality clinical, behavioral, and spectral data relevant to a wide array of research questions. However, the field lacks a standardized, flexible protocol for collecting laboratory-grade experimental data remotely.
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1Department of Psychological Sciences, Purdue University, West Lafayette, IN, United States.Kelleher 1*, Taylor Halligan 1, Nicole Witthuhn 1, Wei Siong Neo 1, Lisa Hamrick 1 and Leonard Abbeduto 2