F.O.C.R.	Familial Ovarian Cancer Register
	Frequently asked questions What is the study for? Who can join the study? What happens if I agree to take part in the study? What happens next? What would I have to do once my family and I are taking part in the study? What about confidentiality? What will happen with the information I give? Are there any results from the blood sample? What if I decide not to take part? If I have any questions, who can I ask? What is the study for? We are trying to find out more about the causes of ovarian cancer, so that we can find ways to prevent it. One way that we can do this is to collect medical and family history details from people who have been affected with, or have a family history of, ovarian cancer. Who can join the study? You can take part in the study if there are at least two members of your family with epithelial ovarian cancer. This can be yourself and another close relative in your family or two other close relatives on the same side of the family. What happens if I agree to take part in the study? To begin with, you will be asked for details and/or documents concerning two (minimum number for entry into the study) cases of ovarian cancer in your family. At this stage, you will also be sent an information leaflet and asked to sign a consent form, which allows us to proceed. If you are affected by ovarian cancer yourself and your relative with ovarian cancer is deceased, only your personal consent will be required. An information sheet and consent form will be sent to you. Where relatives are living, it will be necessary to obtain their written consent before any details can be requested from their medical records. An information sheet and a separate consent form for other family members will be sent to you so that you can pass them on to them. Please remember: If two diagnoses of ovarian cancer in your family cannot be confirmed, it will not be possible for your family to take part in this particular study. What happens next? You will be asked to bear with us while reports are being requested from medical records. We will try to keep you informed of our progress. As soon your eligibility is confirmed, we will contact you and any participating relatives to give you your unique family and personal ID(s), which will stay with you throughout the study. What would I have to do once my family and I are taking part in the study? We will ask you to fill in a questionnaire at home about your family history, and your own medical history. If you need any help, our family interviewer can help you on the telephone. We may also ask you in the future to provide us with a small blood sample, which can be taken at your GP's surgery, but this is not compulsory. What about confidentiality? All the information you give to us is strictly confidential. We will not pass it on to anyone, not even other members of your family nor your doctor, without your permission. What will happen with the information I give? The information you provide will be used to confirm your family history of cancer. We will need to obtain medical details about how the cancers were diagnosed and treated. This information will be kept completely confidential and will be used for research purposes only. If you would like advice and information about your medical care, it will be necessary for you to get a referral from your GP to your local cancer genetics specialist. We are unable to arrange appointments ourselves, or provide screening or genetic testing, but we can help you with information about the services available in your area. Are there any results from the blood sample? The blood sample will be used for research purposes only. It is important to understand that there will not be an immediate 'result', like you would expect from an ordinary blood test. We will use the blood samples to look for genes that may increase the risk of developing ovarian cancer. This may take several years. If we do find something, it may indicate that members of your family might have an increased risk of developing cancer. If you decided to give a blood sample, we will provide you with a form where you can indicate whether or not you would like to be informed if we find something. The results will not be given to anyone else without your consent. What if I decide not to take part? There is no pressure on you to take part; if you change your mind at any time you can leave the study. You do not have to give a reason. Your decision will not affect your own care or treatment in the future, or that of anyone in your family. If I have any questions, who can I ask? Carole Pye, our family interviewer will be pleased to answer any queries you might have. The doctors coordinating this study are Professor Bruce Ponder, Professor of Oncology and Dr Paul Pharoah, Cancer Research UK Senior Clinical Research Fellow.
Last update 7th September 2007	Contact the web master	About this site