Ovarian cancer

  • Quality standard
  • QS18
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Quality statement 3: Panel germline genetic testing for non-mucinous high-grade epithelial ovarian cancer

Quality statement

Adults newly diagnosed with non-mucinous high-grade epithelial ovarian cancer are offered panel germline genetic testing. [new 2025]

Rationale

Germline genetic testing identifies pathogenic variants present at birth that increase the risk of developing ovarian cancer. It also identifies the risk of developing other cancers and, for adults with stage 3 or 4 non-mucinous ovarian cancer, being tested as soon as possible after diagnosis can also influence first-line treatment options. Detection of germline pathogenic variants also enables testing to be offered to eligible blood relatives. Those found to carry pathogenic variants can then opt for screening or preventive interventions to minimise their cancer risk. Performing both tumour and panel germline testing is important because variants detected uniquely by each form of genetic testing can be identified.

Quality measures

The following measure can be used to assess the quality of care or service provision specified in the statement. It is an example of how the statement can be measured, and can be adapted and used flexibly. Some localities may want to focus on equality of care depending on local needs, such as by comparing data on uptake stratified by ethnicity.

Process

a) Proportion of adults newly diagnosed with non-mucinous high-grade epithelial ovarian cancer who were offered panel germline genetic testing.

Numerator – the number in the denominator who were offered panel germline genetic testing.

Denominator – the number of adults newly diagnosed with non-mucinous high-grade epithelial ovarian cancer.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from patient records.

b) Proportion of adults newly diagnosed with non-mucinous high-grade epithelial ovarian cancer who had panel germline genetic testing.

Numerator – the number in the denominator who had panel germline genetic testing.

Denominator – the number of adults newly diagnosed with non-mucinous high-grade epithelial ovarian cancer.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from patient records. The NDRS's germline molecular data set collects germline molecular data.

What the quality statement means for different audiences

Service providers (secondary and tertiary gynaecology services) ensure that panel germline genetic testing is offered to adults newly diagnosed with non-mucinous high-grade epithelial ovarian cancer in accordance with local pathways and protocols.

Healthcare professionals (members of gynaecology oncology multidisciplinary teams, clinical geneticists supporting mainstream services or genetic counsellors) have access to panel germline genetic testing and are aware of local pathways and protocols.

Commissioners ensure that they commission services that can provide panel germline genetic testing for adults newly diagnosed with non-mucinous high-grade epithelial ovarian cancer, in line with NHS England's national genomic test directory. They monitor providers to ensure that testing is offered, and when it is taken up, it is carried out as soon as possible after diagnosis.

Adults newly diagnosed with non-mucinous high-grade epithelial ovarian cancer are offered a blood or saliva test ('panel germline genetic testing') to detect variants they have been born with and may pass on. The results enable their risk of other cancers to be identified and the most beneficial form of treatment to be planned in the first-line setting. Information from this test also enables relatives to be tested if a variant is identified.

Definitions of terms used in this quality statement

Panel germline genetic testing

A type of genetic test (a blood or saliva sample) that looks for inherited variants that are present in the DNA of every cell of the body and have been present since birth. It enables inheritable pathogenic variants to be identified in relevant ovarian cancer genes. [NICE's guideline on ovarian cancer: identifying and managing familial and genetic risk, glossary and expert opinion]

Equality and diversity considerations

Differences in uptake of genetic testing by ethnic group was identified as an equalities issue during development of the quality standard. It is important that information is provided to reduce barriers limiting understanding around genetic testing. This can be addressed by providing educational resources, in multiple languages, such as:

These resources have been developed by Ovarian Cancer Action's IMPROVE-UK programme Demonstration of Improvement for Molecular Ovarian Cancer Testing (DEMO) in collaboration with Sandwell and West Birmingham NHS Trust, in conjunction with the Cancer Research UK Cambridge Centre. They have not been produced by NICE and are not maintained by NICE. We have not made any judgement about the quality and usability of the resources. Other resources may also be available.