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UK Familial Ovarian Cancer Screening Study

About 5% of ovarian cancers are thought to be familial. Women with strong family histories of breast and ovarian cancer or mutations in BRCA1 or BRCA2 genes may have up to a 15-45% lifetime risk of developing the disease. This is higher than the general population risk.

What is the UK Familial Ovarian Cancer Screening Study?

The UK Familial Ovarian Cancer Screening Study (UKFOCSS) is trying to find out whether ovarian screening is beneficial for women with strong family histories or mutations in BRCA1 or BRCA2. Researchers led by Dr James MacKay and Professor Ian Jacobs will collect screening data on 5000 women to analyse its efficiency.

What is the aim of the study?

Ovarian screening aims to detect ovarian cancer at an early stage when treatment has a higher success rate. This study aims to prove whether ovarian screening is effective at detecting cancer and whether it will actually save lives.

Who do we need to participate?

Women are needed for the study and may be eligible to take part if:

  • They have two or more close relatives (parents, brothers, sisters and children) who developed ovarian cancer at any age or breast cancer at a young age.
  • They or someone in their family is known to have a BRCA1 or BRCA2 mutation.
  • They or a family member has been to a genetic centre or family cancer clinic.
  • They are already having ovarian screening.

How will the study work?

You will be referred to a participating genetic centre either by your GP or by the study team. The participating genetic centre will make sure that they have the correct details about your family history, will explain the study in more detail and will ask you to sign the consent forms. A local gynaecologist will then provide annual ovarian screening.

There are two parts to ovarian screening: firstly, a trans-vaginal ultrasound scan of the ovaries; and secondly, a blood test for CA125. Ultrasound scans use sound waves to obtain a picture of a part of the body. To see the ovaries a thin ultrasound probe is inserted into the vagina. This is not painful, although it can be uncomfortable, and doesn't take very long. If this is not acceptable then a trans-abdominal scan, which uses a probe on the abdomen (the same as used for pregnant women), will be performed. The picture that this produces of the ovaries is less clear.

You will be asked for three blood samples a year. The blood sample tested for CA125 (which is often raised in women with ovarian cancer) will be taken at the same time as the ultrasound. The other blood samples will be taken four months either side of the annual screening and will be used for future research into ovarian cancer screening.

There are no clear clinical practice guidelines for screening at present, so not all NHS health care trusts offer this service. Your GP or genetics service should be able to tell you about the options available in your area. We hope the results of this study will help to set good clinical practice in the future, eventually resulting in a more consistent service across the UK.

If I am interested in taking part who should I contact?

If you are interested or would like more information about UKFOCSS please ring Philip on 0207 380 6916.

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