Mapping improvements for TYA cancer

Tell us a little about your recent work on leukaemia…

My scientific group is based at the Paul O’Gorman Leukaemia Research Centre within the School of Cancer Sciences at the University of Glasgow.

We focus on a cytogenetic abnormality that causes leukaemia known as Philadelphia chromosome. It causes chronic myeloid leukaemia – which can progress into an acute leukaemia – and is seen in some cases with acute lymphoblastic leukaemia. We use novel scientific techniques, including single cell sequencing, clonoSEQ, and spatial transcriptomics/proteomics to help us understand these diseases better.

My clinical interest is within teenage and young adults (TYA), where I subspecialise in leukaemia and myeloproliferative diagnostics and treatment. I am particularly focussed on ensuring equity of access of diagnostic testing and clinical trial availability in this age group and in all cancer types (both solid and blood). I work with several groups throughout the UK, including the ECMC North TYA working group, which focus on this same goal. The ECMC have been fundamental in allowing me to collaborate with others with similar interests.

In terms of precision medicine, there have been some really promising success stories – tell us what approaches you are excited about to help younger patients… 

Teenagers and young adults with cancer often have different biology to both paediatrics and adult counterparts. We need to understand their disease better both at a scientific level but also at a clinical translational level.

We are using novel techniques in the lab to understand this better, including looking at single cell gene sequencing to understand different individual cell populations and spatial biology which is allowing us to understand the disease within its cellular environment in many different cancer types. We hope to replicate these findings in in vitro and in vivo models to allow testing of new (or repurposed drugs) that we hope to translate to clinical practice in the future.

Carefully conducted clinical trials with translational scientific outcomes and collection of tissue is key to this improvement. There have been great advances in haematology and oncology over the last 5-10 years; the DETERMINE clinical trial demonstrates how our use of precision medicine diagnostics can guide early phase trial recruitment. It’s a real triumph, and I look forward to seeing how this approach develops in the future.

What are some of the unique needs and challenges for teenagers and young adults in clinical trials?

Teenagers and young adults with cancer represent a significant clinical unmet need within both solid and blood cancers. Despite constituting a rare population (less than 1% of all cancer cases in the UK), this demographic is underserved both scientifically and clinically.

Treatments of these cancers traverse paediatric and adult protocols and, typically, improvements in outcomes have been slower than in other age groups. This is likely due scientifically to limited ‘TYA-specific’ research, patient heterogeneity and small number of cases. It’s also difficult to extrapolate data from clinical trials because of age-exclusions and poor teenager and young adult recruitment and retainment, which has been well demonstrated through NCRI trials within the UK.

We are hindered in the UK by poor access to trials for TYA patients with many trials still recruiting with age exclusions. We are further hindered by geography, where trial set-up needs to allow for decentralised approaches to care, particularly in the context of a rare population.

But the challenges for teenagers and young adults go beyond age and geography. It is well recognised that a cancer diagnosis at a key developmental time-point, such as adolescence, leads to significant short- and long-term impact on physical and mental health. For survivors, late effects of largely chemotherapeutic strategies can result in significant morbidities (cardiovascular, cerebrovascular, psychosocial etc.), higher rates of secondary cancers, and fertility impairment.

The psychological impact for these patients is great and this was recognised in the final report of the James Lind Alliance Priority Setting Partnership for TYA with cancer research priorities, where the top priority was to answer ‘what psychological support package improves psychological well-being, social functioning and mental health during and after treatment?’

Studies show a cancer diagnosis can disrupt education, employment, the development of social and romantic relationships, complications to fertility, sexuality and body image. Recognising that young people can be affected in this way highlights the need for a specialist service in their cancer care journey; a service that goes above and beyond cancer treatment, with a particular emphasis on the holistic needs of young patients.

Talk a little bit about how the ECMC is helping meet these challenges and advance treatments for teenagers and young adults

The ECMC is helping to increase the visibility of teenagers and young adults with cancer, highlighting the barriers that this population face within clinical trial availability and recruitment. They are allowing a conversation to develop between clinicians, academic institutions and industry that will lead to change and improvement for this underserved population in both scientific and clinical research.

The ECMC have developed a road map to help improve access to clinical trials for teenagers and young adults – why do we need this?

The road map developed through the ECMC aims to ensure that teenagers and young adults across the UK have equal access to early-phase clinical trials compared to other age groups. The road map shows ways in which research can be fairer, more accessible and inclusive. It was developed by people with expertise in TYA care as well as people affected by TYA cancers.

It identified 3 aims to improve clinical trial availability for teenagers and young adults:

1. Increasing visibility of available trials
2. Making research more accessible and inclusive to increase participation
3. Recognising the importance of biobanking to increase understanding of disease biology

Tapping into the ECMC network sounds incredibly useful for clinicians and trialists… is it open to all in the cancer research community?

The ECMC is a great resource, for both oncologists and haematologists. It allows open discussion of trial ideas and highlights accessibility of clinical trials available within the UK.

The ECMC EC trial finder tool is useful and helps raise the visibility of open early phase clinical trials in the ECMC network. More recently, through the ECMC, TYA experts have developed a ‘ECMC TYA Trials Advisory Teams channel’ which allows healthcare professionals to discuss difficult cases with an expert panel within oncology and haematology. This will be used to discuss cases and highlight potential trial opportunities.

Importantly, the ECMC allows a collaborative network which is the key to change for teenagers and young adults with cancer.