‘World-first’ registry of patients at high genetic risk of cancer to be launched

NHS England will collect patient information on over 100 genes linked to an increased risk of cancer, in a bid to identify those most at risk and automatically invite them to screening and routine tests.

Around 120 cancer susceptibility genes will be covered by a new ‘world-first’ central registry, which will include patients diagnosed with cancer who have been found to have inherited faulty genes, as well as patients found to have susceptible genes variants.

NHS genomic testing is offered to people with cancer or with a family history of cancer, and those identified as having an inherited risk of cancer will be added to the single central register.

Related Article: Experimental drug offers ‘functional cure’ for one in five chronic hepatitis B cases

For people with changes in certain genes such as BRCA, they will be automatically invited to screening and offered routine tests for certain cancers, including breast cancer, NHSE said.

The commissioner also said that the register could help identify thousands of men with known BRCA gene mutations who could benefit from screening for prostate cancer, if the UK National Screening Committee confirms its draft recommendation for this screening strategy.

Prior to being added to the registry, patients tested via the NHS Genomic Medicine Service and clinical genetic services will be informed of their diagnosis and provided with information around the associated cancer risks.

NHSE said that expanding the use of genomic testing to identify people at risk of certain cancers will be ‘a major part’ of the upcoming national cancer plan, which is expected to be published next week.

The creation of the NHS National Inherited Cancer Predisposition Register follows on from the Lynch syndrome register, which has ensured people diagnosed with Lynch syndrome are identified and offered routine preventative screening.

Related Article: Cases of melanoma skin cancer in UK reach record high, charity warns

NHS England clinical director for cancer Professor Peter Johnson said: ‘Finding out you have an inherited risk of cancer can be life-changing, but it also supports people to access tailored advice on risk-reducing steps and vital monitoring, to increase the chances of any cancers being picked up early or even preventing the disease altogether.

‘As we look to the future of cancer care with our upcoming National Cancer Plan, we know we must continue to find ways to prevent cancers from reaching late stage and this programme will be an important part of helping us save more lives.’

Today NHS England has also announced it is reducing the level at which traces of blood in a FIT test trigger further investigation for bowel cancer.

Related Article: Health news watch: what patients read about in May

The UK National Screening Committee has issued draft advice against routine NHS prostate cancer screening – but said there is evidence screening should be considered for men with faulty BRCA genes.

A version of this article first appeared on our sister title, Pulse.