This blog will cover topics of interest that affect our community. Unless otherwise stated, the blog articles will be written by Sue Friedman, Executive Director of FORCE.

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We Need Your Help Now! An urgent update on incredibly important research for women at high risk of ovarian cancer

February 1, 2012

If you were one of the high-risk women who participated in the large GOG-199 research study, thank you for helping advance critical research that will lead to better health outcomes for our community. Your continued participation in a related study, which is easy and involves only a simple annual questionnaire, will help researchers continue this important work.

Studies specifically for high-risk women are rare and necessary to address the serious issues we face. This uniquely focused research depends on our participation, which also shows researchers and funding agencies that our community is important and supports continued research. If we are to discover better methods of detection, prevention, and effective treatments, we must do our part by participating in these studies.

This is why I am so distressed to learn that funding for an important research program for women at high genetic risk of ovarian cancer is threatened, not because the funding isn’t available, but due to lack of subject participation. GOG-8199 is a continuation of GOG-199, and is only open to women who enrolled in the original GOG-199 study. GOG-199 is advancing what we know about hereditary ovarian cancer. The study:

  • enrolled 2600 high-risk women;
  • collected valuable DNA, sequential serum and plasma samples, and samples of normal and cancerous tissue obtained during risk-reducing salpingo-oophorectomy;
  • could yield clues that will help us :
    • understand the causes and development of ovarian cancer;
    • improve early detection and prevention options;
    • develop better ways to pinpoint and personalize ovarian cancer risk estimates;
    • understand how non-BRCA genes influence ovarian cancer risk in mutation carriers and other high-risk women;
    • address quality-of-life issues for those undergoing surgery or surveillance; and
    • test a method of using individual CA-125 trends to detect early-stage ovarian cancer.

Please read the following important message from Dr. Mark H. Greene of the National Cancer Institute and Study Chair of GOG-199 and GOG-8199.

Attention All Participants in GOG-199, the National Ovarian Cancer Prevention and Early Detection Study for Women at Increased Genetic Risk of Ovarian Cancer

GOG and the National Cancer Institute have launched a new but closely-related follow-up study for which only women who participated in GOG-199 are eligible. It extends the follow-up of GOG-199 participants for an additional 5 years, in an effort to improve the precision of cancer risk estimates and increase the usefulness of GOG-199-related biospecimens. The new study—designated GOG-8199—requires only the signing of a new consent form for the additional follow-up, and completion of a brief annual follow-up questionnaire by snail-mail, telephone or email. In-person visits to GOG study centers are NOT required. The new study does not include additional biospecimen collection, additional screening tests or the potential for surgery. It simply collects information on how participants are doing, and whether they have developed new cancers or undergone additional risk-reducing surgical procedures. This new information will be linked to the data that each GOG-199 participant has already contributed, substantially increasing the overall value and usefulness of the GOG-199 data base.

Unfortunately, accrual to GOG-8199 has been distressingly slow, and GOG is at risk of losing its funding for this study if a substantial number of additional participants are not recruited by May 2012. We are asking GOG-199 study participants who might now be willing to consider joining this extension (GOG-8199) to contact the GOG site at which you were originally enrolled and discuss joining 8199 with your GOG research nurse. Please act at your earliest possible convenience, if we are to avoid the closure of this important addition to GOG-199. We offer a special shout-out to those of you who have already enrolled in GOG-8199. You are already in the system and do not need to respond to this request. Many thanks!

Thank you all for having made GOG-199 such a success. Analyses of the major study end-points are now underway, and it is anticipated that important new findings will be published during the coming year.

Mark H. Greene, M.D.
National Study Chair, GOG-199 and GOG-8199

For more information about GOG-8199 and to learn how to enroll (open only to those who were in GOG 199) please visit the study website.

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  1. […] these research studies so that we can prove whether or not these new drugs work. Last year, a major study on hereditary ovarian and fallopian tube prevention and detection closed due in part to lack of […]

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