The ALDO project 

The ALDO project - Avoiding Late Diagnosis of Ovarian Cancer

The ALDO (Avoiding Late Diagnosis of Ovarian Cancer) project is a partnership between UCLH Cancer Collaborative and Abcodia Ltd. The project was conceived as part of the Cancer Vanguard’s challenge to industry in 2017, to work with the NHS on projects to improve the early diagnosis of cancer. UCLH Cancer Collaborative is leading the project on behalf of its two partners in the former Cancer Vanguard – Greater Manchester Cancer Vanguard Innovation and RM Partners.

Abcodia is a private company dedicated to improving early cancer diagnosis who are funding this project.

If you would like to take part in the project, then please contact the project team on uclh.ALDO@nhs.net.

  • What is the purpose of the project?

    Women who carry a mutation in the BRCA1 and or BRCA2 gene are at a high risk of developing ovarian cancer. The only way to prevent ovarian cancer is to have risk-reducing surgery (having the ovaries and fallopian tubes removed). However, many women delay having surgery for a number of reasons such as wanting to complete their family, avoiding early menopause and associated symptoms, or because they have other significant health problems which make surgery too risky.

    There is currently no standard surveillance or monitoring recommended or in place for this group of high risk women who do delay having surgery. The aim of this project is to test a method of surveillance within the NHS and gather evidence to help the NHS decide whether this should be adopted as standard practice.

  • What will the project involve?

    The project will run for a year and will recruit 2,000 eligible women to take part. To be eligible, women must carry a mutation in the BRCA1 or BRCA2 gene and have chosen not to undergo risk reducing surgery to remove their ovaries and fallopian tubes at the present time.

    Participants will be required to have a blood sample taken at their local GP surgery every four months. This will be sent off and tested for CA-125, a protein which increases in cases of ovarian cancer. The result of the CA-125 will then be analysed by the ROCA Test, which tells us how likely it is that a woman currently has ovarian cancer.

    The ROCA Test calculates an individual’s risk by looking at their age, their menopause status and previous CA-125 levels - if any are available. Some women whose risk score is elevated, may then need to have further investigations, such as an ultrasound scan. These will be carried out in one of the project centres in London, Manchester or Liverpool, and participants in the project would need to travel for these tests.

    Routine surveillance with the ROCA Test does not prevent ovarian cancer, but it can detect the cancer at an earlier stage than if no surveillance is done. The ROCA Test has been tested successfully in several clinical trials over the past 15 years involving over 200,000 women. 

    At the end of the project, the data collected will be independently evaluated. The results of the evaluation will be shared with NICE and NHS clinical commissioners so that they can assess whether this service is beneficial to NHS patients. We hope also to publish the results of the evaluation so that a wider audience can benefit from this project.

  • Can I take part in the project?

    The project team have been working with specific genetics centres and familial cancer clinics to contact women who might be interested in participating. We are also opening the project more widely to women across England who meet the following criteria:

    • Have a known BRCA1 or BRCA2 mutation
    • Are aged 35 or over
    • Have not had both ovaries removed at surgery. Women can still take part if only one ovary has been removed or if they have one or both of fallopian tubes
    • Are willing to travel to London, Birmingham, Liverpool, Manchester, North Tees or Southampton for any follow up investigations, should these be necessary.

    If you would like to take part in the project, then please contact the project team on uclh.ALDO@nhs.net. They will send you a full information pack which details the project, what is required of you as a participant, and the risks and limitations of the project, so that you can consider whether you would like to take part.