Rarer cancers

The National Cancer Intelligence Network works with its partners to improve the range and quality of statistics available about less common cancers, including cancers registered without a specification of site.

One of the partners that the National Cancer Intelligence Network works with in this area is Cancer52, an alliance of organisations working to address the inequalities that exist in policy, services and research into the rare and less common cancers and to improve outcomes for patients with these highly challenging diseases.

Lead teams from the NCIN and Cancer52 meet on a quarterly basis and the teams are jointly committed to keeping issues related to rare and less common cancers high on the agenda.

The partnership is currently jointly seeking funding for an analyst to work in the NCIN central team to increase the overall resource available to enable additional work on rarer cancers. 

If you are a charity representing rare and less common cancers and would like to find out more about Cancer52, or would like Cancer52 to raise a data related question on rare and less common cancers with the NCIN team during one of the partnerships quarterly meetings, please contact jane.lyons at cancer52 dot org.uk link jane.lyons@cancer52.org.uk

Cancer52

Cancer52 have grown from an initial group brought together at the request of the National Cancer Director, Mike Richards to input into the Cancer Reform Strategy.

They are so named because 52% of cancer deaths in the UK are from the less common cancers (i.e. excluding the ‘big four’: bowel, breast, lung and prostate), although in 2010 this proportion increased to 53%.

Cancer52 is an alliance of more than 60 organisations working to address the inequalities that exist in policy, services and research into the less common cancers and to improve outcomes for patients with these highly challenging diseases. Most who work for the organisation give their time and resources on a voluntary basis.

Cancer52 members are all organisations concerned with the less common cancers. Many of which are very small: over half have an annual income below £200,000; many exist on incomes of only hundreds of pounds a year.

Their aims are:

  • Listening. Cancer52 listen to the authentic and direct voices of the less common cancers community (including patients and survivors, carers, families and other representatives).
  • Representing. Cancer52 raise the profile of the less common cancers, giving member charities and those they represent a more powerful voice and the driving force of a larger group.
  • Sharing. Cancer52 share information and experience, making each member organisation more effective in its work.

Events

On 20 September 2012, the National Cancer Intelligence Network held an information workshop for members of Cancer52.The aim of the day was to ensure that members of Cancer52 understood the role and potential uses of cancer data.  The objectives of the day were:

  • To explain how cancer information is generated
  • To review sources of cancer information, particularly for less common cancer
  • To highlight problems in extracting and interpreting information
  • To explain how data are used for research, and how confidentiality is ensured

The presentations can be seen below:

Cancer52 workshop presentations

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NCIN publications on rarer cancers

The following are publications produced by NCIN on rarer cancers: