Gateshead Health Foundation Trust are actively taking part in the SONATA study. Under The Data Protection Act 2018 we are legally required to explain how your personal information and data will be used. The below Privacy notice v1.2 is specific to the SONATA study. It explains how and what patient data will be collected throughout the trial.
To learn more about the SONATA study, please view the trial webpage here.
To view Gateshead Health’s full privacy notice please click here.
Privacy notice v1.2 5.10.2023
The SONATA study helps gynaecological services to improve the care they provide to women who are undergoing investigation for possible ovarian cancer. This information will used to help services in England, to improve the care and outcomes for other women undergoing testing in primary care for possible ovarian cancer.
When patients see their GPs with symptoms that might indicate ovarian cancer, a CA125 blood test is carried out but this test does not identify all patients with ovarian cancer and wrongly identifies some patients as at risk of having ovarian cancer. It is possible that this can be improved by carrying out an additional test, HE4, on the same blood sample and calculating a score called the ROMA score: this is being investigated in the SONATA study with the aim of improving ovarian cancer diagnosis.
As part of your investigation, staff record information in an electronic record and obtain a sample for testing. They will use this sample and information gathered as part of your testing to improve care and outcomes for patients who have symptoms that might suggest ovarian cancer in the future. Identifiable data will only be accessed to link data from different sources prior to anonymisation for analysis.
As a very large number of representative patients are needed for this research, it is not possible to contact everyone who will be included. The application was reviewed by the Confidentiality Advisory Group (CAG). CAG is an independent group of lay people and professionals which provides expert advice on the use of confidential patient information without consent. CAG recommended that our application should be supported and the Maker within the Health Research Authority approved this. If you do not want your data to be used in the study, that is still possible
- If you do not wish your data to be used for any research and have opted out of your data being used for purposes other than direct care, your data will not be used in this project as the National Data Opt Out will apply to the SONATA study.
- If you have not opted out and do not wish your data to be used in this project, please email the study team at [email protected] or [email protected] giving your NHS number. If you do not know your NHS number, please give your date of birth and the date (or approximate date) at which you had your blood test after seeing your GP instead. Your data will then be excluded from the study.