Written evidence from the National Cancer Research Institute (NCRI) (BTR0006)
The National Cancer Research Institute (NCRI) is a UK-wide partnership of funders of cancer research that promotes collaboration and coordination in the field in order to maximise the value and benefits of cancer research for patients and the public. Since 2002 the NCRI Partner organisations have spent more than £5.5B on cancer research.
NCRI Partners are from government (the health departments of the four UK nations and three government-funded research councils) and charity sectors. Current Partners are: Biotechnology and Biological Research Council, Bloodwise, Breast Cancer Now, Cancer Research UK, Chief Scientist Office Scotland, Children with Cancer UK, Department of Health (which includes the National Institute of Health Research), Economic and Social Research Council, Health and Care Research Wales, Public Health Agency Northern Ireland, Macmillan Cancer Support, Marie Curie, Medical Research Council, Prostate Cancer UK, Royal Castle Lung Cancer Foundation, Tenovus Cancer Care, Wellcome Trust, Worldwide Cancer Research.
NCRI Partner organisations each have their own goals and strategies to guide the way they fund research and the types of research they fund. For example, some Partners focus on research relevant to a specific cancer type, others fund a broad portfolio of more basic research and some focus on research relevant to patient care and support. NCRI Partners come together under the auspices of the NCRI to build closer connections with each other, gain oversight of the cancer research landscape and work collectively to support cross-cutting activities where coordination and collaboration are necessary to make progress.
Each Partner has equal representation and all Partners contribute to the funding of NCRI’s core activities (using a model based on Partner’s cancer research spend). Partners choose to contribute funding to support other collaborative activities that fall within their funding remit.
The day-to-day work of the NCRI is supported by a team of staff known as the NCRI Executive.
NCRI’s core activities are long-standing activities that are central to the NCRI – they help to form the ‘big picture’ of UK cancer research and support the development of cancer research in the UK. NCRI’s core activities cover:
NCRI has been collecting cancer research funding data since 2002 to understand how money is spread across the various areas of research, to identify any gaps and to track how funding changes over time.
The NCRI Cancer Research Database (CaRD) captures NCRI Partner organisations’ direct spend on cancer research. NCRI Partners are asked to submit data each year on how much they have spent on research, and the research projects and programmes that they spent it on. Partners submit information for each cancer-relevant grant that is active on the 1st April for that year. Each piece of research funding is then coded by cancer site and by research category, using an international classification system called the Common Scientific Outline (CSO). This process is carried out by trained coders with mechanisms in place to ensure consistency and accuracy of the coding.
NCRI publishes annual summaries of these data, as well as periodic reports looking at trends or particular areas within the funding portfolio. This helps to identify trends and gaps in funding across a range of research areas. NCRI Partners can also use the information to undertake detailed analyses of their own.
As a member of the International Cancer Research Partnership (ICRP)[1], NCRI is able to upload portfolio data to the ICRP database, alongside that of other countries. ICRP performs analyses on these international data and publishes periodic reports that examine trends in investment and research activity. The ICRP database can be searched by keywords, funding organization and other terms to find details of individual awards.
In 2014, approximately £498M of research was funded by NCRI Partners and captured in the CaRD database. This level of research funding has remained around £500M since 2009. Research funding is defined as either non-site specific, which includes fundamental research and research relevant to all cancer types, or site-specific research. In 2014 funding for site-specific research formed £230M of the £498M total.
In 2014 funding for brain tumour research by NCRI Partners was £7.7M representing 3.3% of site-specific funding. Funding for brain tumour research has increased more than 10 fold since 2002 (from £740K). A proportion of non- site specific research will also contribute to the understanding of brain tumours and to the treatment, care and support of patients with brain tumours, however it is not possible to put a figure on this.
There are many other funders of cancer research in the UK beyond the NCRI Partners and the CaRD dataset does not provide the complete picture but it does capture a significant proportion of the funding and provides a good indicator of cancer research funding in the UK. For example, in 2012 the NCRI worked with members of Cancer 52 (an alliance of predominantly small cancer charities working together to promote improved diagnosis, treatment and support for those affected by rare and less common cancers) to carry out a joint analysis of research spend on less common cancers (for this analysis defined as site-specific research that was not breast, colon and rectal, lung or prostate). In this analysis the NCRI data itself captured 94.9% of the site-specific research funding on less common cancers[i].
The rigorous collection of high quality data that allows robust analyses requires significant efforts and the benefits of extending the data collection on a regular basis to include other data would need to be considered against the costs of this.
NCRI’s other collaborative activities address research gaps or barriers and capitalise on scientific opportunities that are too large or complex to be taken forward by one organisation alone. Details of all NCRI’s initiatives are listed at: http://www.ncri.org.uk/initiatives.
Topics arise through a combination of horizon scanning within NCRI as part of its daily business, through unprompted approaches from the research community where they perceive an unmet need, or through solicited input from Partners or the wider community. The CaRD database also offers a platform for identifying trends and gaps in research.
Where an opportunity or need is identified and there is agreement that this should be explored further, a phase of exploratory work begins to determine whether there is a case for action. This includes gathering evidence through data analysis, workshops, interviews, surveys or literature review and looking at previous and existing activities in the UK and elsewhere. This generally results in a public-facing report. Where there is a clear course of further action for NCRI, and interest amongst the Partners in funding such action, an initiative planning phase begins to create a proposal for collaborative funding. Where no clear course of action is evident but the need remains, the topic becomes a watching brief under which the NCRI Executive keeps an eye out for changes in situation that might make action possible or alternative ways to make progress.
To date, the majority of NCRI’s initiatives have focussed on cross-cutting topics relevant to most cancer types. However, NCRI has carried out some work to understand barriers to research in specific cancer types where there has been a mandate from the Partners to do this.
Many of NCRI’s activities will have relevance to brain tumour research, however it is worth highlighting the following activities that have more direct relevance.
The NCRI Brain Tumour Clinical Studies Group (CSG) and its subgroups promote the development of, and recruitment to, clinical trials for adult patients with brain tumours. The main CSG and subgroups have also identified and are actively addressing strategic priorities to enhance the ability to carry out clinical research for these cancers. In addition to its work in the UK, the Brain Tumour CSG coordinates the UK’s engagement with international research partners, including leadership of an international group for rare brain tumour research through the International Rare Cancers Initiative. Further details of the CSG’s activities are available in its annual report: http://csg.ncri.org.uk/wp-content/uploads/2014/11/NCRI-Brain-CSG-Annual-Report-2014-15.pdf.
Brain and spinal tumours in children bring wide-ranging and distinct research challenges. To address these, the Children’s Cancer & Leukaemia (CCL) CSG has a permanent subgroup for developing and delivering clinical research in children’s brain tumours. Details of this group’s activities and strategy are available in the CCL CSG annual report at: http://csg.ncri.org.uk/wp-content/uploads/2014/11/NCRI-CCL-CSG-Annual-Report-2014-15.pdf.
Interactive portfolio maps showing current clinical trials for both the Brain Tumour CSG and the CCL CSG can be viewed via http://csg.ncri.org.uk/portfolio-maps/. Many of these portfolio studies are available to be opened for recruitment at hospitals throughout the UK, provided the necessary expertise is in place and local permissions are obtained. In England, the delivery of the portfolio (including trial set-up and recruitment of patients) is coordinated by the NIHR Clinical Research Network (CRN), which comprises 15 Local CRNs (LCRNs) which together cover the whole country. In a new initiative from April 2015, each of these LCRNs has designated a senior clinician as the Subspecialty Lead for Brain Tumours. These local leaders are liaising with the national CSGs to help plan development and delivery of the portfolio, identify new research opportunities and areas of clinical need.
Radiotherapy and surgery are major forms of treatment for brain tumours; research in these areas is critical to drive improvements in treatments and to ensure better outcomes for patients.
In 2008, a group of NCRI Partners produced a rapid review of further needs in radiotherapy and radiobiology with a ten-point action plan that centred on building national leadership[ii]. As a result, in 2009 the NCRI set up the Clinical and Translational Radiotherapy Research Working Group, known as CTRad. CTRad focuses on clinical and translational issues relating to radiotherapy and radiobiology, as well as developing a portfolio of practice-changing trials. CTRad has also been tasked with actively promoting translation of new discoveries into practice. It brings together around 80 experts from the different disciplines involved in radiation-related research.
More recently NCRI has launched the Future of Surgery workshop series, bringing together experts to deal with challenging, cross-specialty topics and to influence the future of surgery research in cancer. Five workshops will run over the next two years, each producing a report or publication that brings together expert opinion and identifies potential next steps for surgery research in cancer. One of the workshops, that will focus on technology trials in surgery, is being led by a neurosurgeon.
Access to high quality tissue samples is critical for research. The NCRI’s Confederation of Cancer Biobanks (CCB) is a consortium of biobanks and biosample collections based in the UK. It was established in 2006 when the number of biobanks was starting to increase and there was a need to encourage greater coordination and promote harmonisation between biobanks – enabling them to share best practice and raise awareness of their collections with researchers. This is particularly important for rare and difficult to obtain samples. The CCB has led work with members of the biobanking community to develop standards that can be used by biobank staff to assure the quality of the samples and data that they hold. NCRI also established the NCRI Biosample Directory, an online tool for researchers to find biosamples and for biosample custodians to raise awareness of their collections. This directory includes details of several collections containing brain tumour samples. The directory and work on standards now fall under the remit of the UKCRC Tissue Directory Coordination Centre[2].
Pathology research is critical for many diseases, especially cancer – almost every cancer patient requires a histological or cytological test from pathology for initial diagnosis. And with the rapidly increasing need for innovative testing to assess prognosis and to support stratified medicine approaches, there has been a revolution in approaches developed to analyse cells at the molecular level. Following a review of pathology research a report summarising barriers to research and the recommendations to address them was published in 2009[iii]. Overall, however, little improvement has occurred in the academic cellular pathology landscape since 2009. Individual organisations have made steps to improve the situation, however, a coordinated and collaborative approach is needed to align and maximize the benefits of current efforts. As a result, in 2015 the NCRI together with the ECMC Cellular and Molecular Pathology Network Group[3] developed the NCRI Cellular Molecular Pathology Initiative, known as CM-Path. CM-Path aims to achieve the change needed to support academic cellular molecular pathology in the UK and make the resulting benefits available to the wider research community. The initiative is currently in set-up phase and is due to launch in early 2016.
In addition to existing Partner research funding in brain tumour research that has been captured through the CaRD database, two NCRI Partner organisations, Cancer Research UK and Children with Cancer UK, are prioritising research into brain tumours and specifically looking at barriers to brain tumour research and how these might be addressed. Both organisations have provided evidence to the Committee with further details of their work.
December 2015
1
[1] https://www.icrpartnership.org/
[2] https://www.biobankinguk.org/about/
[3] http://www.ecmcnetwork.org.uk/network-groups/CellMolPath-group
References:
The National Cancer Research Institute (NCRI) and Cancer52 Research into less common cancers: An analysis of research spend by Cancer52 members and NCRI Partners in 2012. Available from: http://www.ncri.org.uk/publication/
[ii] The National Cancer Research Institute (NCRI) Rapid Review of Radiotherapy and Associated Radiobiology 2008. Available from http://www.ncri.org.uk/publication/
[iii] The National Cancer Research Institute (NCRI) Fostering the Role of Pathology in Research 2009. Available from: http://www.ncri.org.uk/publication/