Patient samples offer the best way to study primary bone cancers in order to understand what is causing them and how they can be effectively treated. However, the processes for collecting patient samples are complex, time-consuming and resource intensive.

In recognition of these challenges, Bone Cancer Research Trust introduced the ground-breaking Infrastructure Grants in 2017. Through this dedicated funding, we sought to address the issue of a lack of routine patient sample collection.

We fund primary bone cancer surgical centres in England, supporting their teams to consent and recruit patients, and to collect, process and store vital blood and tissue samples to be used in a wide range of primary bone cancer research.

Samples that are not directed towards specific studies and projects are bio-banked locally and are available for request by researchers nationally.

What do the Infrastructure Grants fund?

The specialist surgical centres use these grants to fund the experts and resources needed to achieve routine sample collection for all patients diagnosed with primary bone cancer.

This includes dry ice and liquid nitrogen for maintaining samples, as well as blood tubes and other specialist laboratory equipment.

Crucially, across the different centres, funding is also used to cover the costs of a wide range of scientific and medical professionals, including a clinical nurse specialist, a bio-bank co-ordinator, a tissue sample technician, a tissue studies co-ordinator and a biomedical scientist.

Collectively, these experts support the entire process, from consenting and recruiting patients, gathering medical data, collecting, labelling and storing samples, receiving, logging and processing samples, managing tissue requests, distributing samples, and setting up and over-seeing biological studies.

In the case of the Royal Orthopaedic Hospital, Birmingham, the Infrastructure Grant also funds a part-time whole genomic sequencing (WGS) nurse to support patients in understanding and consenting to this test, to collect samples, and to forward these, alongside the necessary documentation, to a specialist genomic lab. WGS is a test that analyses the entire set of DNA instructions in a tumour sample, looking to identify the changes which may have caused, or be related to, a patient’s cancer.

Funding this specialist nursing role means that more patients have the chance to access vital information which could lead to a greater understanding and more targeted treatment of their own individual tumour.

How does this funding impact patients?

We know that research using patient samples and linked medical anonymised data provides the best insights into primary bone cancer, allowing researchers and clinicians to take the next steps towards improving treatments and outcomes for patients.

So far, this has led to the collection of more than 12,200 blood and tissue samples. Of these, around 6249 have been allocated to specific primary bone cancer research projects, whilst just over 6000 have been stored in local bio-banks ready for use in future research.

Since the establishment of the infrastructure grants, despite recent COVID-19 related challenges, an average of 86% of primary bone cancer patients approached across all five centres have consented to donate their samples for use in research.

These ongoing grants are therefore crucial to ensuring that vital research can continue to take place, and that all patients diagnosed with primary bone cancer have the opportunity to contribute.

Through these collective, UK-wide efforts, we are supporting the research needed to achieve our ultimate goal of having new, kinder and more effective treatments by 2033, as outlined in our 10-year strategy, ‘More patients are surviving. More patients thriving.’ You can read our ambitious strategy in full here.

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