Hello families and carers,
We are excited to invite you to shape a new research project led by Heather Bailey, Associate Professor in Infectious Disease Epidemiology at UCL Institute for Global Health. This study will focus on the health and education outcomes of children with congenital CMV infection, and we need your valuable input.
Who can contribute?
We are looking for families and carers of children with congenital CMV, in the UK, aged between 4 and 12 years old.
What’s the study about?
We want to hear your views on which outcomes are most meaningful and important to consider in future research on congenital CMV and neurodevelopment. Even if you do not have any specific concerns about your child’s neurodevelopment, you can still take part. Neurodevelopment includes:
- Cognitive functioning (memory, problem-solving, learning, attention)
- Motor skills (walking, running, balance, writing)
- Language and communication
- Social and emotional development
What about hearing?
Even though hearing is not the main focus, we welcome your thoughts on outcomes related to this as well.
How can you help?
Heather is interested in any neurodevelopmental outcomes you think should be prioritised for future research and why. Here’s how you can get involved:
- Email your feedback to Heather
- Arrange a chat with Heather
If you would be happy to chat, you can contact Heather to schedule a phone or Teams call at a time that works for you (up to 30 minutes). During the chat, Heather will ask you about your views on priorities for future research. This could draw on your experiences so far with diagnosis and any areas of concern, but you do not need to share anything about your family’s or child’s experiences that you do not want to. Heather is also interested in your thoughts about health and school data being used for research on CMV, and on CMV testing being done as part of research projects. You can talk about any or all of these topics. Those taking part in a call will be offered a shopping voucher worth £15 as a thank you for your time.
Not sure if you can help?
If you think you might be able to contribute but aren’t sure, please reach out anyway. Heather will be happy to discuss how you can get involved.
Interested? Have questions?
If you’d like to share your thoughts or arrange a chat, please get in touch with Heather. Your input, no matter how brief, will be incredibly valuable.