Methodology

To acquire data about UK non-commercial research spend on rare and less common cancer, organisations associated with NCRI, or Cancer52 were approached to take part in this analysis. The Cancer52 membership of over 100 cancer charities was contacted through All Member Meetings and e-bulletins, and those that funded research were invited to submit data to the NCRI for inclusion in the analysis. Data from NCRI partners – which include government and charities – was already submitted to the NCRI to populate the Cancer Research Database.  Permission was therefore sought from each NCRI partner for their organisation’s data to also be included in this analysis. Six charities are both NCRI partners and Cancer52 members: Blood Cancer UK, Brain Tumour Research, Children’s Cancer and Leukaemia Group (CCLG), Myeloma UK, Ovarian Cancer Action and Pancreatic Cancer UK.

A working group of volunteer members was established to review the submission documents for usability. Following this, participating research active Cancer52 members provided data on all awards that were active in 2020-21 including the name of the principal investigator (PI), location, start and end date, award title and abstract, and funding details for the financial year.

Each research award was coded using two classification systems – the Common Scientific Outline (CSO) to define the research category and NCRI Cancer Site codes to define the cancer site(s) of focus (see boxed sections for more information). Only awards that were active – agreed by the funder – between 1st April 2020 to 1st April 2021 were included in the analysis.

In previous analyses, Cancer52 members were required to be members of the Association of Medical Research Charities (AMRC). This time the requirement was removed, to broaden the scope of the research and allow the inclusion of smaller organisations.

The data from 24 Cancer52 member organisations were used in this analysis. The data collection and coding processes used for the Cancer52 analysis were identical to those used to populate the NCRI Cancer Research Database, which captures the annual spend on cancer research by NCRI partners. This common methodology allowed these two datasets to be combined for a more complete analysis of spend on rare and less common cancer research in 2020-2021. Collating the spend into larger NCRI grouping, such as Gynaecological or Gastrointestinal, allowed certain spending patterns to be observed. To avoid the limitations of collating cancers into broader groups, the data is also broken down into individual cancer types within some sections of the analysis. This is discussed further in the Conclusion under Reflections on the data.

In the analysis, common cancer awards were those focussed on either breast, bowel, lung or prostate cancer. Rare and less common cancer awards were those focussed on a specific cancer site, which was not one of the four most common cancers. Although mainly focussed on rare and less common cancers, some Cancer52 members have a spectrum of interest that does include one or more of the most common four cancers. Research on the more common cancers, or which is relevant to all cancer sites, is identified separately in the analysis.