FPC registry

What is the study?

We are working together with a group of pancreatic specialists in Europe to recruit families with multiple cases of pancreatic cancer and to identify genetic markers for the disease. This research work may help to identify those who are at risk and those who might benefit from screening measures to detect pre-cancerous changes at an earlier and potentially more treatable stage. We are also hoping to look for environmental factors that may be involved in cancer development.

 

What is involved if you want to join the study?

If you would like to participate in the study we need about one hour of your time to complete some questionnaires at home, and to then arrange to have a small blood sample taken. With your permission, we need some personal background and family details recorded on a secure database register. We would also like your relatives, if they are willing, to join the study so that we can study the inheritance of any genetic markers that we have identified.

 

Medical information

Participants are asked to complete questionnaires about themselves, their diet and lifestyle, their own medical history and their family background. Additionally we would like anyone who has had pancreatic problems or cancer to give us permission to contact their doctors for more information about their medical history. This will be done only with additional signed consent from these individuals (or next of kin if deceased) to do so. This will include asking for any surgical and pathological samples to be sent to Liverpool for further microscopic and genetic tests.

 

Taking blood samples

Blood samples will be tested to see if we can identify any genetic markers or altered genes for pancreatic disease. These might help us to identify who is at risk of developing pancreatic cancer. The results of tests on these blood samples will be compared both within, and between families.

It is important to note that we will not normally report individual results to any of the study participants. However, there is the option on the EUROPAC consent form to indicate that a participant would like to be informed of any findings that are relevant to their family. If we identify a gene that is causing pancreatic cancer in a family, we will suggest that unaffected family members seek genetic advice before proceeding with predictive tests. From some people we will ask for an additional blood sample to allow cells to be stored so as to allow the blood cells to be kept indefinitely in the laboratory. In this way the immortalised cells can be stored frozen in a cell bank for future use.

People are encouraged to join the study, whether they wish to hear of possible research findings or not. The results of this study may help to guide us to know who is at increased risk from pancreatic cancer. We can then discuss whether further pancreatic screening tests are needed.

 

Confidentiality

A registry of all participant is held securely on a locked computer in Liverpool. No one outside of this study will have access to this data, although if you give us your permission GP will be informed that you have taken part in the study. No personal or identifying details will be released to people outside of your family. With your permission we would like to share information about any significant results with other members of your family. All other personal information will be handled in a confidential manner.

 

Adverse effects

Apart from a small risk of superficial bruising the taking of a blood sample should not affect anyone. Genetic testing can reveal altered genes that can predict susceptibility to certain illnesses in the future. If any new genes are identified that are suspected to cause pancreatic cancer participants will be contacted and . Only people affected with pancreatic cancer who have a blood sample would be tested in the first instance. The results of such tests will be provided either by EUROPAC or by the doctor who referred the family. All results produced by this research study should be repeated in an authorised health service-testing laboratory. If we find a faulty gene in your family, we recommend that any unaffected members of the family who are thinking of being tested, should carefully weigh up the pros and cons in discussions with their local Regional Genetics Advisory Centre before they proceed. Individuals can then be tested using a blood sample. Some family members will already have given a sample when they consented to join the study. Any other family members interested in testing can have a sample taken by their GP. If you, or a member of your family, are found to carry an altered gene there may be effects upon your ability to obtain health or life insurance, or employment.

 

Future studies

As this research work proceeds we hope to develop further research studies and recommendations. With your permission we would like to contact you about these. Please keep in touch with the doctor who gave you this information sheet.

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