• Stage 1) The BEOND Study. The BEOND study is an ongoing large-scale questionnaire survey ran by Dr Jane Waite and colleagues, which aims to recruit over 3000 families across a range of syndromes and neurodevelopmental conditions. Data from the BEOND study on RTS will be made available for Courtney’s PhD so that she can identify factors that may be particularly important in the development of mental health problems in RTS. The analysis of the BEOND study data will inform later stages of the PhD.
• Stage 2) Interviews. Alongside recruitment of the BEOND study, an interview is being developed, which will focus on emotions and emotional experiences in people with RTS, including anxiety, low mood and emotional outbursts. Once the interview has been finalised and piloted, Courtney will be recruiting families who would like to take part in the interview. Courtney is planning to speak to parents or carers, who we will ask to describe behavioural signs of emotional experiences that they notice in the child or adult they support, and individuals with RTS who would like to self-report on their own emotions.
• Stage 3) Direct Assessments. The face to face assessments will be selected based on the interviews and the findings from the BEOND study. However, Courtney plans to include face to face assessments that will inform her about the individual’s day-to-day ability, a variety of tasks and tabletop games that will tell her about a person’s ability to regulate emotions and behaviour, and tasks that measure autism characteristics.

Alongside these three stages, Courtney will be working on other tasks such as a conducting a review of the research literature to select the most appropriate tasks, analysing existing datasets to inform her work, updating RTS videos and parent behaviour guides on the Further Inform Neurodevelopmental Disorders website (www.findresources.co.uk), and contributing to summaries for RTS clinical guidelines once they have been published.

Courtney will be reaching out to families via our charity to carry out face-to-face activities with people with RTS and their families/support workers. Courtney will be conducting research with people with RTS of all ages and abilities. If you are interested to take part, please contact Courtney at greenhc2@aston.ac.uk

How this benefits RTS families

The research will produce high-quality resources for families of people with RTS. This will include:

• Practical advice about enhancing mental well-being.
• Information about what increases or hinders mental well-being in people with RTS through their lives.

This information will be communicated to families via a range of interactive resources including infographics, parent guides, videos, personalised feedback reports and online content for the website Further Inform Neurogenetic Disorders – www.findresources.co.uk.

On the FIND website, you can locate information and videos about the Aston team’s previous RTS research, funded by Cerebra. This includes findings on repetitive behaviour, memory, impulsivity, social behaviour, autism characteristics and decision making. These resources are one example of how previous research has already advanced knowledge about the needs of people with RTS.

Several research papers will be published from the PhD, and summaries of the findings will be distributed to over 100 NHS Trusts who are registered with the research team to receive news about RTS. The team will provide workshops, support sessions and talks about mental health and behaviour in RTS for families and professionals.

The research will produce high-quality resources for families of people with RTS. This will include:

• Practical advice about enhancing mental well-being.
• Information about what increases or hinders mental well-being in people with RTS through their lives.

This information will be communicated to families via a range of interactive resources including infographics, parent guides, videos, personalised feedback reports and online content for the website Further Inform Neurogenetic Disorders – www.findresources.co.uk.

At the FIND website, you can locate information and videos about the Aston team’s previous RTS research, funded by Cerebra. This includes findings on repetitive behaviour, memory, impulsivity, social behaviour, autism characteristics and decision making. These resources are examples of how previous research has already advanced knowledge about the needs of people with RTS.

Several research papers will be published from the new PhD, and summaries of the findings will be distributed to over 100 NHS Trusts who are registered with the research team to receive news about RTS. The team will provide workshops, support sessions and talks about mental health and behaviour in RTS for families and professionals.

We truly appreciate all the help and support we receive and we do our utmost best to ensure donations of all sizes are used to the maximum benefit of the RTS community.