*We have been made aware of an error when registering your attendance. If you are unable to register due to a ticket error, please email ella@brainstrust.org.uk to sign up*

Background

People diagnosed with glioma and those close to them often face uncertainty, changing priorities and difficult decisions throughout diagnosis, treatment and beyond. While research continues to advance our understanding of glioma, it is equally important that future research reflects the experiences, priorities and outcomes that matter most to the people it is intended to benefit.

PRIME by brainstrust are supporting a new European research project bringing together researchers from across Europe to explore how more personalised approaches could improve care for people living with glioma. From the very beginning, the research team wants to work in partnership with people affected by glioma, combining lived experience with scientific expertise to help shape the direction of the project and ensure it remains grounded in what matters most to people and families.

As part of this work, brainstrust is facilitating a series of online discussion groups to bring together diverse perspectives from across the glioma community. We will hold separate discussions for people affected by low-grade and high-grade glioma, before inviting participants from both groups to a follow-up workshop where we will bring together shared priorities and explore how these can help shape the research.

Who can get involved?

We are looking for:

• People living with a high-grade glioma (grade 3 or 4)
• Caregivers, family members and loved ones of someone affected by glioma, including those who are bereaved

No previous research experience is needed. We simply ask that you bring your own experiences and perspectives.

As this is a European collaboration, workshops will be held in English.

What will you do?

Join a 90-minute online discussion with the research team and brainstrust, where we’ll explore the realities of living with glioma, what matters most to people and families, and what future personalised care and research should focus on.

These will be small, informal conversations designed to encourage open discussion. There is no expectation to use medical or technical language, and everyone will be supported to contribute in the way that feels most comfortable for them.

Following the initial discussion groups, you will be invited to take part in a follow-up workshop to help refine the priorities identified across both low grade and high grade groups and consider how they can best inform the wider research programme.

Please note that these workshops will take place online via Zoom. You’ll receive joining details after registering.