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A study looking at testing all Ashkenazi Jewish people for a cancer gene (GCaPPS)

Please note - this trial is no longer recruiting patients. We hope to add results when they are available.

This is a study looking at the possibility of offering gene testing to all Ashkenazi Jewish people in London.

Genes are coded messages inside the cell that tell it how to behave. If the gene is lost, or changed due to damage, this changes the coded message.

We know from research that changes in the BRCA 1 and BRCA 2 genes can increase the risk of developing breast, ovarian and prostate cancer. But there are many different changes that can happen in these genes.

Inherited changes in these genes are more common in Ashkenazi Jewish people than in the rest of the population. And 3 of these changes (2 in the BRCA 1 gene and 1 in the BRCA 2 gene) are very common in this group.

The only people offered to have testing for these gene changes are those with a strong family history of cancer. This could miss a number of people who do not have a strong family history but carry this gene. And so they have an increased risk of cancer or of passing these gene changes on to their children.

The researchers think that testing everyone with an Ashkenazi Jewish background for changes in the BRCA 1 and BRCA 2 genes may be better than only testing those with a strong family history of cancer.

The aims of this study are to find out

  • If offering genetic testing to all Ashkenazi Jewish people is better than only testing those with a strong family history of cancer
  • If offering testing to everyone will identify more people with BRCA gene changes
  • How acceptable genetic testing for BRCA genes is
  • The emotional impact of genetic testing for BRCA genes and how it affects quality of life
  • The cost of testing everyone

Recruitment

Start 01/11/2008
End 31/08/2010

Phase

Other

Who can enter

489You can enter this trial if you

  • Have 4 Ashkenazi Jewish grandparents (you can still join if you are not sure that all your grandparents were Ashkenazi Jewish)
  • Are over 18 years old

You cannot enter this trial if you

  • Are known to have a change in one of the BRCA genes
  • Have a parent, brother, sister or child (first degree relative) that has a BRCA gene mutation
  • Have already been tested for a change in the BRCA genes

Trial design

This study aims to recruit 10,000 Jewish people in total. At the moment it is a pilot study and will recruit 1,000 Ashkenazi Jewish people in London. The researchers will then follow this with the main study which will recruit a further 9,000 people.

It is a randomised study. You will be put into 1 of 2 groups by a computer. Neither you nor the researchers will be able to decide which group you are in.

In group 1, everyone will have their blood tested for the BRCA gene changes (genetic testing).

In group 2, only people who have a strong family history of cancer will have their blood tested for the BRCA gene changes.

There is a ‘cooling off’ period of 3 weeks after joining the study. In these 3 weeks if you change your mind, let the research team know and they will not proceed with the testing of your blood sample.

About 6 to 8 weeks after agreeing to take part in the study, the researchers will inform you which group you are in.

Before you are put into a group, you will complete a form about yourself and, your relatives. It will ask about what cancers there are in the family. You take this form with you to an appointment with a specialist counsellor to talk about testing for the gene changes.

On the day you see the specialist counsellor; you will fill in a questionnaire. It will ask you about yourself, your lifestyle, your health and how you feel.

If you decide to join the study and are tested, you will have the test results back between 2 to 3 months after being put into a group.

If your test result is positive you will have another appointment with the specialist counsellor to discuss the result and how you feel about it.

If you have the test for the BRCA gene change, you will fill in a similar questionnaire 1 week, 3 months, 1 year, 2 years and 3 years after receiving your test result.

If you are in group 2 and not tested, you will fill in a similar questionnaire about 1 year, 2 years and 3 years after seeing the specialist counsellor.

A freepost envelope is provided by the study team for the return of these questionnaires.

If you agree to take part in this study, the researchers will ask your permission to take some blood samples. The researchers will use these samples for the genetic test. Some of these samples will be stored safely and may be used in the future, but for research purposes only. Future studies using these samples may help researchers learn more about cancer.

If you don’t wish to give permission for these samples to be used for future research, you don’t have to. You can still take part in the study.

Hospital visits

There are no hospital visits if you take part in this study. But it will involve visiting a specialist counsellor located at a number of places, in London, including community centres and a high street store. You can choose the most suitable location for you. The study team will arrange the appointment for you.

After seeing the counsellor, you can decide if you wish to undergo gene testing and participate in the study, or not.

You do not need to undergo gene testing if you do not wish to. Participation is free, voluntary and confidential.

There is more information about GCaPPS on the study website.

Side effects

The only side effect may be some slight bruising from where the researchers take the blood samples.

If your test shows that you have the gene changes, you may feel frightened, sad, upset or guilty about the possibility of passing these changed genes on to your children. But you will have an appointment with a specialist counsellor to discuss how you feel about having a positive test result.

Location of trial

CLOSED

For more information

Please note: we cannot help you to join a specific trial. Unless we state otherwise in this trial summary, you need to print this page and take it to your own doctor to discuss.

Find out how to join a trial or contact our cancer information nurses for other questions about cancer by phone (0808 800 4040), by email, or at

The Information Nurses
Cancer Research UK
Angel Building
407 St John Street
London
EC1V 4AD

Chief Investigator

Prof Ian Jacobs

Supported by

Academic Study Group on Israel & the Middle East
Agudas Israel Housing Association
Institute for Womens Health University College London (UCL)
Jewish Care
Liberal Judaism
Norwood
Ovacome
Reform Judaism
The Eve Appeal
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Updated: 17 June 2013