Sisters of women with breast cancer joining study

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Thousands of women across the country are voluntarily joining the National Institutes of Health’s (NIH) Sister Study, and they all have at least one thing in common: a sister who has been diagnosed with breast cancer.

None of the enrollees have been diagnosed with the condition themselves, but all of them “have looked at breast cancer in the face of their sister,” the study’s NIH project officer, Dr. Paula Juras, told Reuters Health. These women have experienced “a moment of feeling so helpless and wanting to do something,” she added.

They “feel so empowered by participating,” Juras said, and by “being able to make a contribution” to breast cancer research.

The 10-year Sister Study, conducted by the NIH’s National Institute of Environmental Health Sciences, will investigate how the women’s genetics and environment affects their susceptibility to breast cancer.

Enrollment began in October of 2004, during National Breast Cancer Awareness month, and will continue through September 2007, to meet a target of 50,000 women. To date, more than 24,000 women between the ages of 35 and 74 have enrolled.

Thousands more are still expected to join and researchers are particularly interested in recruiting women who are traditionally under represented in medical research, such as minorities, seniors, and women who work in blue-collar industries, like manufacturing. To that end, the Sister Study has partnered with a variety of local, regional and national groups to help increase awareness about the study.

Seventy-three-year-old Lois Catrambone is also doing what she can to help spread the word. Having lost a sister to breast cancer in 2002, her interest was piqued when she heard about the study on public radio. “I couldn’t do anything to help her get well, but maybe this is something I could do now,” she told Reuters Health.

Catrambone, who lives in the Chicago area, not only joined the study, but is also urging others to join. “I didn’t expect to get as involved in it as I am,” she said. Catrambone carries brochures with her about the study, distributing them whenever she can. She also sets up tables at local hospitals during various events and has visited senior centers and church groups to spread awareness and invite more seniors to participate.

“I wanted to take it one step further,” Catrambone said. “Not to minimize in any way research for a cure, (but) this is the only study that I know that focused on cause,” she said.

At the start of the study, women will be asked to participate in extensive interviews and provide samples of blood and urine. Afterwards, they are expected to do little more than keep the researchers informed of their current contact information and any changes in their health status and complete additional questionnaires or interviews every other year for the length of the study. All personal information will be kept safe and confidential.

For the most part, the “heavy lifting is done at enrollment,” said Juras, adding: “We tried very hard to make it easy for women to participate.” The study does not require participants to travel, take any medication or make any changes to their diet.

www.sisterstudy.org

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