Investigators: Helen Leonard, Jenny Downs, Nicholas Buckley
Project description
Individuals with Rett syndrome generally have difficulties with gross motor skills. Even those who can walk independently or with assistance participate in low levels of physical activity and have high levels of sedentary time, yet being active is good for both health and quality of life. As with other rare disorders, those with Rett syndrome are scattered geographically and therapists typically see small numbers of cases. This makes it difficult for local therapists, carers and therapists to develop the expertise to provide the best support for physical activity.
Drawing on the literature and expert opinion, we will develop an assessment and support manual for physical activity in individuals with Rett syndrome. We will then conduct a clinical trial and test the effectiveness of our strategies in decreasing sedentary time, increasing physical activity and increasing quality of life. Participating families will have a daughter with Rett syndrome who can stand and/or walk by herself or with assistance, and will live in a rural setting. The research team will work with families, carers and therapists using Telehealth and Skype to deliver the intervention. Guided by the results of our trial, we will then develop an online resource so the wider community has access to valid assessment and effective treatment strategies.
External collaborators
- Michelle Stahlhut (Rett Syndrome Center)
- Meir Lotan (Ariel University)
- Cochavit Elefant (University of Haifa)