BACBONE: Turning your priorities into research

We are thrilled to announce BACBONE, a new clinical trial designed with and for people living with myeloma.

Developed with our MyeTRIAL partnership, BACBONE will explore whether a custom-made spinal brace can improve quality of life for people with myeloma-related spine damage. What’s truly special about this trial is it puts people’s day-to-day lives at the centre and focuses on what you told us matters most: remaining independent, being able to keep doing the things you enjoy.

A partnership built around your priorities

The MyeTRIAL Partnership is a collaboration between Myeloma UK and the University of Leeds Clinical Trials Research Unit. BACBONE is one of the first studies to emerge from the partnership and demonstrates how patient priorities can shape meaningful clinical research.

Throughout its development, the BACBONE and MyeTRIAL teams worked closely with people living with myeloma and their carers to understand the challenges they face.

What people told us was striking. For many people living with spinal damage from myeloma, the biggest challenge is not simply pain.

It is losing your independence.

It is no longer being able to do the things you enjoy.

It is the impact on your quality of life.

Measuring what matters most

These conversations directly influenced the design of the trial. BACBONE’s main measure of success reflects what patients said mattered most: being able to do the things that are important to them with less pain and fewer physical limitations.

What is BACBONE and why is it needed?

Myeloma bone disease is a common complication of myeloma, with around 3 in every 4 people showing evidence of bone disease when they are diagnosed. Bone disease thins and weakens the bones and can lead to fractures.

The back bones (vertebrae) that make up the spine are often affected. Fractured vertebrae can make the spine bend forwards. As myeloma treatment gets the myeloma under control, the bones can start to harden and heal but people can be left with this painful curve that affects the ability to move and function normally.

Some hospitals use back braces to try to straighten the spine and prevent further fractures during healing, but we need more evidence about the wider impact and if it can give people a better quality of life.

BACBONE is designed to give us some answers.

260 newly diagnosed patients from across the UK will take part in the clinical trial. Some will receive standard treatment whilst others will wear a custom-fitted spinal brace over the first 12 weeks following diagnosis alongside usual treatment. Comparing the two groups, researchers will be able to explore if bracing allows people to stay active, manage pain better, maintain independence and crucially if it improves people’s quality of life.

If BACBONE shows that spinal bracing does help people to live well, then it could shape the future of care and treatment for people with myeloma right across the UK.

BACBONE has the potential to do more than tell us whether a spinal brace works. It could help us understand how to support you to live your life the way you want to.

It’s exactly the kind of patient-centred research that MyeTRIAL was created to deliver.

Turning ideas into clinical trials

Developing a high-quality clinical trial, driven by patients, requires substantial work before the first person is ever recruited to take part. Researchers need support to engage with people living with myeloma, build collaborations, develop study designs and secure major funding from organisations such as the National Institute for Health and Care Research (NIHR), who have funded BACBONE (NIHR reference number: NIHR175280).

Through MyeTRIAL, Myeloma UK makes this possible. Without this investment, many promising ideas will never reach the stage of becoming a clinical trial.

The MyeTRIAL Partnership, and all our research, is only possible thanks to the generosity of our many supporters.