Implementing telehealth support to increase physical activity in girls and women with Rett syndrome - ActivRett: Protocol for a waitlist randomised controlled trial

Jenny Downs, Meir Lotan, Cochavit Elefant, Helen Leonard, Kingsley Wong, Nicholas Buckley, Michelle Stahlhut

Research output: Contribution to journalReview articlepeer-review


Introduction Individuals with Rett syndrome (RTT) experience impaired gross motor skills, limiting their capacity to engage in physical activities and participation in activities. There is limited evidence of the effectiveness of supported physical activity interventions. This study aims to evaluate the effects of a telehealth-delivered physical activity programme on physical activity, sedentary behaviour and quality of life in RTT. Methods and analysis This is a multicentre study, conducted in Australia, Denmark and Israel. It is a randomised waitlist-controlled trial comparing an intervention to support physical activity with usual care. Participants are children and adults with RTT, recruited from the Australian Rett Syndrome Database, the Danish Center for Rett Syndrome and the Rett Syndrome Association of Israel. The intervention duration is 12 weeks, including fortnightly telephone contact to plan, monitor and develop individual activity programmes. Outcomes are measured at baseline, at 13 weeks and then at 25 weeks. The primary outcomes are sedentary behaviour assessed with an activPAL accelerometer and the number of daily steps measured with a StepWatch Activity Monitor. Secondary outcomes include sleep, behaviour and quality of life. Caregiver experiences will be assessed immediately after the intervention using a satisfaction questionnaire. Group differences for each outcome will be evaluated with analysis of covariance, adjusting for baseline values on an intention-to-treat basis. Ethics and dissemination Ethics approval has been obtained in Western Australia from the Child and Adolescent Health Services (RGS3371), in Denmark from the Capital Region Ethics Committee (H-19040514) and in Israel from the Ariel University Institutional Review Board (AU-HEA-ML-20190331). Manuscripts on the development of the intervention from pilot work and the results of the intervention will be submitted to peer-reviewed journals. Results will be presented at conferences and consumer forums. We will develop an online resource documenting the physical activity programme and available supporting evidence. Trial registration number NCT04167059; Pre-results.

Original languageEnglish
Article numbere042446
JournalBMJ Open
Issue number12
StatePublished - 29 Dec 2020

Bibliographical note

Funding Information:
This study is funded by the peak international patient advocacy organisation for RTT ( and our proposal has been subject to scientific and consumer review. Prior to our previous feasibility study, we held a teleconference with Australian parents who shared their experiences of enjoyable physical activities for their daughters. When developing our manual for the current study, we conducted an international survey of caregivers and professionals who support individuals with RTT about how they supported their daughter to be physically active and what they would want in a physical activity programme. These ideas and perspectives informed the study intervention manual. Insights from the survey will be published to share with parents and therapists key insights on facilitators and barriers to individuals with RTT being physically active. The dissemination plan will include presentations to families at consumer and community forums for their feedback.

Publisher Copyright:
© 2020 Author(s) (or their employer(s)).


  • community child health
  • developmental neurology & neurodisability
  • paediatric neurology

ASJC Scopus subject areas

  • Medicine (all)


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