News · Research project on learning in young people with NS

Posted on 28th November 2024 by Sandie

BlogResearch

We are supporting this important research project, led by Dr Shruti Garg at Manchester University, and encourage parents/carers to get involved with the co-design session on 9th December (see detail below), and young people between 11-17 years old to take part in the actual study (see image for detail).

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Discussion session for parents of children and young people with Noonan Syndrome

Researchers at the University of Manchester are going to be running a small discussion session for parents of children and young people with Noonan Syndrome. The focus of the discussion session will be to explore parents’ thoughts, views and ideas to help shape a specific research study in which children and young people with Noonan Syndrome would take part.

Key details:

1. The group discussion session will be held on: Monday 9^th December 2024
2. Time: 6.00pm – 7.30pm
3. Location: Online over Zoom
4. Payment: You will be paid £37.50 for your time and contributions after the session. An optional £5 remote working allowance is also available to cover any costs linked to taking part in an online activity, such as data charges – please do let me know if you’d like for me to put this through for you.

1. • Bank transfers are paid within three weeks following the session / us receiving your correct bank details (whichever is later) but in the very unlikely event there is an issue, it can take up to one month.

What is the project about?

We know that some children and young people with Noonan Syndrome have difficulty with learning. As such, a research study is looking to understand how children and young people with Noonan Syndrome learn and what are the different factors (e.g., chemicals in the brain) that affect how they learn. By understanding this better, it’s a way to explore different treatments options to help those children with Noonan Syndrome who experience learning difficulties.

Children and young people with Noonan Syndrome who take part in this study will be asked to carry out different tasks, e.g., puzzles and games whilst having a brain scan. We want to make sure what we’re asking of children and young people with Noonan Syndrome is acceptable and explore ways to make it more accessible.

By getting involved and using your personal experiences and insights to shape this research project, you’ll help to ensure this research will meet the needs of people with Noonan Syndrome in the future. Remember, this discussion session is about shaping what this research project looks like in practice rather than you participating in the research project.

How to get involved

If you’d like to join the group discussion session, please get in touch with Sinduja (sinduja.manohar@mft.nhs.uk) by Wednesday 4^th December 2024 and let her know:

1. If you will be joining our discussion session on Monday 9^th December 2024 from 6.00 – 7.30pm
2. Date and time for you to have a quick chat with Sinduja before our discussion session. This should only take about 15 mins and will be an opportunity for her to tell you more about the discussion session so that you know what to expect and to answer any questions. This can be during evenings and weekends if that’s easier for you.

We do only have 6-8 spaces so may not be able to offer everyone a space if there is a high level of interest. If you are unable to join this discussion session but are interested in getting involved more broadly, please get in touch as we would love to have you involved in the future!

If you have any questions or would like to chat through anything, please let Sinduja (sinduja.manohar@mft.nhs.uk) know and she’d be happy to help! Thank you for giving your time to support health research – we hope to work with you on this important project!