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Sister Study seeks more Native women

DURHAM, N.C. - With just a few months left in their recruitment period, officials behind the Sister Study - a national research project studying sisters of women who've had breast cancer - hope to have 200 more Native women sign up.

The study must have 50,000 women participate; and in order to ensure accurate research results representative of the entire U.S. and Puerto Rican population, organizers hope to have at least 750 American Indian participants. As of August, 565 Native women were enrolled in the study. ''Breast cancer is the second leading cause of cancer death among Native women, and their five-year survival rate is lower than that of white women,'' said Sara Williams, the Sister Study's recruitment coordinator in charge of Native recruitment.

Previous breast cancer research has been limited to mostly white women, Williams said, and scientists are hoping to learn a great deal from the study. The participants must be between the ages of 35 and 74, must never have had cancer and must have a sister who was diagnosed with breast cancer.

Because there is so little known about the environmental causes of breast cancer, many women are compelled to join the study to try and help future families.

The study was officially launched in 2004 after a few years of planning. Organizers have worked diligently to spread the word of the study, publicizing their intent and creating a user-friendly Web site (www.sisterstudy.org). Reaching Indian country can be more difficult.

''We want the cohort to really be diverse and not have everyone in the study be white and middle-aged and work at a desk job,'' Williams said.

Native women who sign up must be residents of the United States; however, they do not need to give their tribal affiliation.

''Because this is not a study comprised of only Native women, it was never the intention to study any differences in breast cancer risk at a tribal level,'' Williams said. ''There will only be broad analyses done among all Native women generally, regardless of tribal affiliation. Still, so much is going to be learned at this level.''

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The Sister Study is a long-term research project. When participants sign up, they'll be asked to take part in two hour-long phone interviews in which they'll give detailed information about their medical history, environment and lifestyle.

Then, the individual will set up an in-home appointment with a female examiner, who will draw blood and take a urine, house dust and toenail sample.

The participants will receive a kit in the mail that has all the information and questionnaires organized in tabbed form. After the initial period, the women will then be contacted every year for 10 years to provide updated information, such as any changes to their health.

''You don't have to take any medicine, you don't have to go anywhere,'' Williams stressed. ''You never even have to leave your house ... I think the most important message now is that you just have to step up to the plate and realize that this is really important to do for future generations of women.''

Women are not paid for their participation and their motivation to join comes from their desire to contribute to scientific research.

The study is being conducted by the U.S. Department of Health and Human Services through their National Institute of Environmental Health Sciences; and because it is a federally funded program, there isn't an open-ended budget.

''I wish we could say, 'Join this program and we'll give you $500!' Williams said. ''We are at the mercy of people's good will. To me, it's almost like a social justice issue. We're really working hard to encourage these women to enroll because we know so little [about Native breast cancer].''

To learn more about the study, visit www.sisterstudy.org. To sign up, call toll-free (877) 4SISTER.