Motor development is one of the areas where people with Williams Syndrome (WS) display delays and life-long difficulties. While motor skills are essential for almost everything we do, there is limited research on the specifics of motor development in infants and children with WS. As a result, syndrome-specific guidance and monitoring tools are sparse among parents and healthcare practitioners.
Within a cross-disciplinary team of experts in neurodevelopmental conditions and computer science, we will follow the motor development of individuals with WS in a prospective longitudinal study. We will use parent reports to determine the age range when children with Williams Syndrome achieve motor milestones. Examples of motor milestones include learning how to sit, crawl, stand and walk. Determining the windows (or age range) when children with Williams Syndrome accomplish these skills, will allow us to create guidance for parents and healthcare practitioners.
Another aim of our research is to study the fine-grained characteristics of the movement of children with WS using videos of children taken when they first start walking independently. We will employ novel techniques, such as motion tracking and machine learning, to analyse the quality of movement in WS and its impact on other areas of development such as language and social skills. The implications of this could be designing early interventions to enhance specific aspects of movement in young children with WS.
This research will involve following the motor development of children with WS (aged 0 to 60 months) for up to 24 months. Participating parents will be asked to complete a motor milestones survey, and every three months for the duration of the study, they will receive an email to remind them to enter any milestone changes. At the point of entering the study, and every 6 months after, parents will be asked to complete a developmental questionnaire (Vineland-3). For each completion of the questionnaire (up to 5 times), parents will receive a $20 gift voucher.
Once a child starts walking independently, parents can send us a video )optional) of their child's first independent steps. Parents whose children are already walking at the start of the study can share retrospective videos. Parents who participate in this part of the study will be rewarded with an additional $40 gift voucher.
The findings of this research will aid the creation of international guidance on motor development in WS. Furthermore, with our combined expertise, we will develop a motor milestones app, thus bringing much-needed technology to the families of individuals with WS. With our guidelines and app, parents and healthcare practitioners would be able to determine whether a child is developing normally for a child with WS or whether there is a cause for concern. The findings of this research will inform early interventions and will have relevance to other neurodevelopmental conditions that present with motor impairment.
For more information, please click here