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The latest news item
National 100k Genome Project focuses on CUP
In December 2012 the Prime Minister announced that the government has earmarked £100 million pounds for a ‘100,000 Genome Project’, offering the hope that it could transform how we diagnose and treat our most complex diseases: "The genome profile will give doctors a new, advanced understanding of a patient’s genetic make-up, condition and treatment needs, ensuring they have access to the right drugs and personalised care far quicker than ever before…. up to 100,000 patients over three to five years having their whole genome - their personal DNA code -sequenced."
In April 2013 it was announced that the Chief Medical Officer’s scientific priority group had selected CUP (along with lung cancer, infectious diseases, and rare diseases) as one of the clinical areas where this important effort will be focused.
In making this decision, it was stated that "...developing a molecular taxonomy is seen as offering a potential leap forwards for the treatment and prognosis of CUP." [Taxonomy = understanding and classifying]. The Department of Health advise that the intention is to start recruitment of patients to the project in April 2014.
What does this mean for CUP patients? Dr Richard Osborne, clinical lead for the NICE Guideline and member of the Cancer of Unknown Primary Foundation’s Advisory Board comments:
“Sequencing provides detailed information about the numerous abnormalities that exist in the DNA of cancer cells. By examining the patterns of defects in well-characterised groups of patients, it will ultimately be possible to know more about the causes and behaviour of the disease, as well as allowing more rational selection of treatment.
In the first instance, CUP patients recruited to the 100k genome project will play a part much like conventional blood donors do today – providing specimens of their cancer as a service for medicine. It is not expected that individuals will directly benefit routinely (though there may be instances where this happens). Instead, it is expected that in time a sufficiently detailed “map” of CUP biology will be developed, to assist in the care of other patients. The details have yet to be worked-out but this is the most fantastic news for CUP patients of the future.”
This new flagship development follows the NICE Guideline for CUP (2010) and the Peer Review Measures (2013) meaning that CUP is now on the radar of the Department of Health (DoH) and the wider NHS in a way that it never has been before. [May 13]
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The Wilson family present money raised in memory of Tracy. Photo: The Mansfield Chad and Hucknall Dispatch.