Biobanks give researchers access to biological material and clinical data on a scale that individual researchers would not be able to gather.

For the chronic lymphocytic leukaemia (CLL) research community, local sample collections are derived from a diverse disease population and may not be suitable for biomarker studies, which need a large number of high-quality samples from a specific population. There is also a need to support research focused on groups of patients which might only be represented in small numbers at a local level. In addition, it can be challenging to annotate samples with clinical information over a long period of time when they are collected locally.

To support the CLL research community, the NCRI Haematological Oncology Group, through the work of the CLL Subgroup, created a biobank to collect samples from two Phase II clinical studies being conducted by one of its members. This biobank evolved to include the collection of samples from all studies led by members of the Subgroup. Alongside the samples, a detailed catalogue of clinical and other information is available through the trial’s units, adding greatly to the value of the biobank to researchers.

As a result of its size and quality, the biobank has supported a range of projects that have used its high-quality samples to better understand CLL. It is widely available to researchers, and as such is supporting a range of research in this area that otherwise wouldn’t be possible.

My experience of interacting and working with the UK CLL Biobank is entirely positive! The application process for access to samples is simple to complete and the biobank team are incredibly helpful and supportive. Furthermore, the necessary decision-making (governance) step is always handled in a timely and efficient manner. Without hesitation, I would say that the UK CLL Biobank is an exemplar of best practice and is literally a “national treasure” that is open and accessible to all of us working in the field of CLL research!

Prof Chris Pepper, Professor in Cancer Research, University of Sussex

Adding value to stored chronic lymphocytic leukaemia samples

The UK CLL Biobank, together with the collaborative nature of the NCRI CLL Subgroup and its connections with industry, were pivotal in attracting a major investment from Genomics England Ltd (GEL) to support CLL research. The ground-breaking GEL 100,000 Genomes project was the first project of its kind in the world to sequence the entire genome (a complete set of DNA) in a large number of people with rare diseases and cancer. Researchers are now able to use this data to far better understand these different diseases and ultimately improve patient care.

Because of the availability of a large number of high-quality, clinically annotated samples, GEL included the biobank as a pilot study for the 100,000 Genomes Project. Full genomic sequences have been created for hundreds of patient samples, considerably increasing the information available to researchers and adding greatly to our understanding of CLL.

This opens up major new possibilities for research in CLL and moves us further towards better diagnosis, care and treatments for the condition.

The Liverpool Biobank supported by Blood Cancer UK is a rare example of success in this field. For years, the biobank has provided an invaluable source of samples to the CLL research community. In addition to providing samples for over 60 publications in 2019, we were also able to sequence almost 1000 samples from patients with CLL recruited into NCRI studies that were sourced directly from the biobank. A number of publications on this biggest sequencing programme ever are now in progress all led by UK researchers.’

Prof Anna Schuh, NCRI CLL Subgroup chair

Meeting the research communities’ future needs

The biobank is working closely with NCRI CLL Subgroup to ensure that it continues to meet the needs of the CLL research community in the context of the rapidly changing therapeutic landscape in this disease. In addition, opportunities are being sought to create a state-of-the-art underpinning information management system to optimise data sharing and analysis and explore alternative financial models to maximise sustainability.

Finally, the nationally co-ordinated approach to biobanking that has been applied to CLL is now also being explored in lymphoma in the hope that it will help to drive more translational research in this disease. Professor Andrew Pettit, Founder and Director of the UK CLL Biobank and Chair of the NCRI Lymphoma Research Group explained, “If we can achieve all this, it will be truly transformative.”