Accelerating research: the path forward for treating rare cancers 

RareCan is a new company based in the UK. Its aim is to accelerate research into rare cancers. However, finding suitable patients willing to take part in research and trials of new drugs is difficult, which impacts the discovery process. Professor Andy Hall, Founding Director and Chief Scientific Officer at RareCan talks to DDW’s Megan Thomas. 

MT: Could you explain why is it harder to find rare cancer patients willing to take part in research and trials of new drugs than other types of cancers? 

AH: Just because a cancer is rare doesn’t mean that the normal rules of statistics don’t apply. It is still essential to recruit sufficient numbers of patients to a randomised trial to demonstrate whether a new approach to treatment is effective. 

Finding enough people willing to take part in research is relatively easy for common cancers, but for a rare cancer it can be difficult due to the low prevalence within the catchment area of a clinical trials unit. Widening the catchment area by involving multiple sites creates additional complexities and expense. This must be set against the problems patients may face in travelling long distances to a central location, both in the costs involved and effects on health. 

MT: This limits the acceleration of research into rare cancers. How does RareCan intend to overcome this obstacle? 

AH: Normally, clinical trial recruitment is physician-led. Conversely, RareCan starts with the patient  – inviting them to register their interest in taking part in research and collecting basic information about their disease and diagnosis. Developing pools of ‘trial ready’ potential recruits saves time assembling sufficient cohorts and can help infer the best location for trial sites. This reduces the burden on participants and the chances of them withdrawing before a trial ends. Patients registered with RareCan can also provide consent for samples, collected at the time of their diagnosis, to be used in preclinical research. This gives researchers access to tissue and blood samples, as well as genetic data, to improve the prevention, diagnosis or treatment of rare cancers. This reduces the time taken to provide samples for research purposes from months to weeks and creates an unparalleled opportunity to accelerate research into rare cancers. 

MT: Part of RareCan’s game-plan is to connect patients with clinical researchers and drug developers to create opportunities to accelerate clinical research. What are these opportunities? 

AH: RareCan offers a rich source of valuable information to researchers, providing rapid, simplified access to patients, data and bio-samples. This will enable more research into rare cancers by helping researchers to find enough participants and samples for a research project or clinical trial to produce meaningful results in a reasonable timeframe. 

With our support, researchers can build precise cohorts of trial participants, and enable the delivery of histology-independent trials, targeting genetic mutations common across a range of different rare cancers and subtypes of common tumours, such as those of the breast, colon, prostate and lung. 

RareCan will also be able to facilitate studies in addition to clinical trials and translational research. For example, it will be possible to identify patients who are willing to complete questionnaires about their experience of living with and beyond cancer. 

MT: What are the main challenges facing research in this area of oncology and how can they be overcome? 

AH:  One of the main challenges in this area, which occurs as a knock-on effect of recruitment obstacles, is a lack of interest in developing new therapies. Not having the appropriate trial participants puts researchers and pharma companies at a disadvantage and discourages innovation – which means there is less research completed and fewer treatments available. 

Finding treatments for rare cancer requires a multi-institutional effort to collect specimens for research and accrue patients to clinical trials – by working with patient organisations and NHS Trusts, RareCan is speeding up this process, making research into this area more attractive for researchers, accelerating progress towards developing new and improved treatments. 

The mix of experience and views within RareCan’s leadership team means we have a clear vision of what the future of rare cancer research should look like, and the ability to deliver that now. 

MT: Can you elaborate on your new approach to research?  

AH: Today there are approximately 740 global life sciences companies investing in 950 products that include a rare cancer target. This translates into an accelerating number of clinical trials taking place, all requiring access to patients, data, and bio-samples. If not readily available to researchers, desperately needed progress in this area will be at risk. 

Our approach is to bring patients, secure data, and high-quality bio-samples under one umbrella platform for researchers to access and use compliantly. The concept originated from the practical difficulties in finding these resources that I personally faced during my time as a Clinical Research Scientist studying rare childhood cancers at Newcastle University. In my discussions with the parents of children affected by rare cancer, I was struck by their desire to accelerate progress by actively participating in research. This led to the idea of a patient-centric approach to research and clinical trial recruitment. The second step was to recognise the extent to which the internet has changed the way the public accesses previously hidden knowledge about health and through this can become both “citizen scientists” and active campaigners for change. Harnessing this energy has the potential to overcome barriers to success, such as trial recruitment.  

MT: How does RareCan’s approach here compare to the dementia model? 

AH: A similar approach to recruitment has been successfully adopted by Join Dementia Research. This is a public engagement and research ‘matchmaking’ service that was launched by our CEO Piers Kotting. The initiative, supported by Alzheimer’s Research UK and the Alzheimer’s Society, allows patients affected by dementia to register their interest in taking part in online research. To date just under 50,000 people have signed up and over 55,000 participants have registered for studies, involving over 300 research sites.  

Although the challenges in recruitment for studies involving patients with dementia are different to those in rare cancer, this demonstrates the commitment of people with serious diseases to assist in research and engage in a digital approach. 

Volume 22, Issue 4 – Fall 2021 

About the author 

Professor Andy Hall, Founding Director and Chief Scientific Officer at RareCan. An Emeritus Professor at Newcastle University, Hall spent over 20 years as a Clinician Scientist, undertaking research into the causes of drug resistance in childhood cancer before co-founding RareCan in 2020. Over his career, Hall has published 138 peer-reviewed articles. 

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