Family

A chance to make a difference for a sister

The bad news is that the Sister Study, which is seeking 50,000 sisters of women who have had breast cancer, is still looking for participants.

The good news is that statement won't be true much longer.

The study, which I wrote about in June 2006, and which one of my co-workers has been accepted into, is seeking volunteers who will be observed now and again over a 10-year period to determine if the shared environments, genetics and life experiences of sisters can help identify types of and treatments for breast cancer.

As of today, however, the participants accepted into the National Institute of Environmental Health Science study will be limited to women of color ages 35 to 74, and white women with a high school education or lower, and white women ages 65 to 74.

”We are very close to reaching the goal of 50,000 sisters enrolled,“ said Paula Scarborough Juras, the project officer of the Sister Study. ”We want to stop enrolling the groups of women we have a whole lot of and who are very well represented and only continue to enroll participant groups that are not as well represented as we would like to have.“

The study is still a few thousand shy of the set goal for participants, Juras said, so there is still room for plenty of the demographic now targeted.

”We wanted to start reaching for under-represented women before we topped out,“ she said.

Fewer than 20 percent of women with breast cancer have any family history of the disease, and less than half of all women diagnosed with breast cancer have any of the known risk factors.

The study is seeking women who do not have breast cancer now. Volunteers are asked to sign up at www.sisterstudy.org, or by calling 1-877-474-7837.

Those who speak Spanish can go to www.estudiodehermanas.org.

If accepted, you will be sent a packet containing several file folders with questionnaires that need to be filled out and returned, worksheets for future phone interviews and folders for nail, urine and dust collection.

The first phone interviews will ask for information about the sister with breast cancer and about your environment growing up. The second will ask about medicines taken in the past 12 months.

A health care professional will visit to collect the urine sample and take a blood pressure reading and body measurements.

After that, a researcher will contact you annually about your health and every two years you will have to complete another detailed questionnaire.

As studies go, that's not very invasive at all. The study does not require participants to take any medicine, undergo any medical treatments, or make any changes to their habits, diet or daily life. Researchers just want to monitor you and thousands of other women from afar.

A couple of years ago, scientists discovered that black women under 50 who get breast cancer have a type that is particularly aggressive. Because of that discovery, scientists can now concentrate their research on that specific sub-type and hopefully find a cure or at least a better treatment for it.

This study will help in that regard. With these findings, scientists will be better able to identify a link between family members.

But they need all demographics from all parts of the United States to participate in order for the findings to have any validity.

Currently, according to the Web site, the study needs nearly 700 more African-Americans to make their numbers statistically relevant. Only 2,019 Latinas have signed up, and only 959 of other minorities such as Asians and Pacific Islanders, and native Americans.

Of all the participants, only 6,280 have only high school diplomas or less, and only 6,827 of all participants are 65 to 74 years old.

This is a rare chance to help someone whom you may never meet. Or you could be improving the future health of a younger relative.

”Every year, thousands of women are diagnosed with breast cancer,“ said Dale Sandler, chief of the Epidemiology Branch at NIEHS and principal investigator of the Sister Study, in a release. ”One day we would like to be able to prevent breast cancer in our daughters and granddaughters.“

That's a good thing.

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