Background
Researchers are developing new approaches to treating diffuse intrinsic pontine glioma (DIPG).
The research is still at an early, preclinical stage, meaning potential approaches are being developed and tested in the laboratory and are not yet treatments being offered to children.
The research team is now considering the next stages of this work. Before their plans are developed further, PRIME by brainstrust is supporting them to work in partnership with families affected by DIPG to understand what matters to families and what researchers should be considering as the research develops.
Who can get involved?
We are looking for:
- Parents and caregivers with experience of supporting a child or young person affected by DIPG, including those who are bereaved
- No previous research experience is needed- we simply ask that you bring your own experiences and perspectives
What will you do?
Join a 90-minute online workshop with brainstrust to help shape this early research.
We’ll explore what families would want researchers to consider when developing new approaches to treatment, including how treatments are given, how frequently they might need to be given, what this could mean for children and families day to day, and what might make a potential approach more or less acceptable.
Because this research is still at a very early stage, we won’t be asking you to assess a finished treatment or clinical trial. Instead, we want to understand what researchers should be thinking about now, while the research is still developing.
This will be a small, informal conversation with no scientific knowledge needed. You can contribute as much or as little as feels right for you, and there is no need to discuss anything you would prefer not to share.
A note about this conversation
We recognise that conversations about research and potential future treatments for DIPG may bring up difficult experiences and emotions. If you would like to talk to us about the session before deciding whether to take part, please get in touch with Ella (ella@brainstrust.org.uk).
Please note that these workshops will take place online via Zoom. You’ll receive joining details after registering.
