Vol. 12 Issue 3, Summer 2007

More than 40,000 Women Have Joined the Sister Study 10,000 Sisters still needed to help find the causes of breast cancer.
The Ribbon 

The National Institute of Environmental Health Sciences (NIEHS) needs 10,000 more women to join the Sister Study, the nation’s largest research effort to find the causes of breast cancer.

Barbara Moore (see photo) is one of almost 2,000 participants from New York. “My sister Mary Catherine wasn't aware that she had breast cancer until it was late stage. She had a mastectomy in 2003, and on Thanksgiving of that year she passed away. I was devastated. We were so close. The Sister Study said they were looking for the causes of breast cancer. That really caught my attention.”

Now helping with recruitment herself, Ms. Moore will be addressing BCERF’s Regional Cancer and Environment Forum on September 27 in New York City, hopefully reaching potential Study participants, or those who can relay the message to possible recruits.

Since its national launch in October 2004, The Sister Study has recruited more than 39,000 participants – women whose sisters were diagnosed with breast cancer. Recruitment is far from over. NIEHS hopes to enroll a total of 50,000 women whose sisters had breast cancer. The Sister Study must meet its enrollment goal by the end of 2007.

“Many women have heard about the Sister Study, but they haven't signed up yet, and we really need them now,” said Dale Sandler, Ph.D., Chief of the Epidemiology Branch at NIEHS and Principal Investigator of the Sister Study. “Doctors know very little about how the environment may affect breast cancer, that is why the Sister Study is so important. We hope women will make that call today,” she added.

The Sister Study requires very little time from its volunteers, and volunteers can participate in either English or Spanish. The 10-year observational study begins with participants answering questions about diet, jobs, hobbies, and things they've been exposed to throughout their lives to determine what may influence breast cancer risk. Later, at a convenient time and location for the participant, a female health technician collects small samples of blood, urine, toenail clippings, and house dust, which will also help give researchers a better picture of the woman’s environment and genes.

Women in the U.S. and Puerto Rico, ages 35 to 74, may be eligible to join the Sister Study if their sisters (living or deceased) had breast cancer. Women who join the Sister Study must never have been diagnosed with breast cancer themselves. Breast cancer affects women from every walk of life, so the Study is seeking women of all backgrounds, occupations, ages, and ethnic groups. The Sister Study is tailoring its recruitment efforts to help ensure the needed mix of women.

Women in trades and industry. Ms. Moore learned about the Sister Study at the Coalition of Labor Women (CLUW) convention in Detroit in 2005, where women working in trades and industry could be reached. These women – including those in non-traditional trades – have powerful information to share with the Study. Sara Williams leads the effort to recruit Native American Sisters and Women in Trades. Says Ms. Williams, “Women working in trades may encounter hazardous exposures at work. They may lead stressful lives trying to balance work and home life. Or, they may be more physically active or fit than other women because of their job requirements. All of these factors may be important in determining who will or will not develop breast cancer. The Sister Study is designed to better understand which factors increase the chances of developing breast cancer and which factors may reduce the chance of developing this disease.”

Native American women. “Sadly, women are not equal when it comes to breast cancer risk," explains Ms. Williams. “The five-year survival rate for Native American women is lower than that of other ethnic groups in the United States. Although the breast cancer mortality rates for most Native Americans is lower than those for white, African American, and Hispanic women, the rate of death due to the disease has risen since the 1970s in selected areas of the United States.” Currently over 550 Native American women are enrolled.

Senior women. Senior women are particularly encouraged to join. Older women have a longer history of living and working in a variety of surroundings, than the younger women in the study. Breast cancer risk increases steeply with age, and the risk of developing breast cancer is greatest for women over the age of 65. Also, factors that have been linked to breast cancer risk differ for premenopausal and postmenopausal women. It is important for older women to participate in studies like the Sister Study so that we can better understand why they are at increased risk.

African American women. Says Dr. Sandler, “African American women often face breast cancer at a younger age, have more aggressive tumors, and have the highest breast cancer death rate of women in the U.S.” “If you're a woman of color whose sister had breast cancer, your participation in the Sister Study is especially important,” continued Dr. Sandler. “We want to learn more about how to protect your daughters and your granddaughters from this devastating disease.”

Other important recruitment efforts target Latina sisters, and Asian and Pacific Islander sisters. Ada Pacheco is another participant from New York, who was born in Puerto Rico. She says with regard to her sister who developed breast cancer, “We grew up together, went to the same school, shared the same bedroom, clothes, friends…everything! I joined the Sister Study because I hope this research will help find what causes breast cancer so we can help prevent it in future generations. I need to know why my sister had breast cancer and not me. We were born in the same place, raised together, ate the same food…why Carmencita and not me?”

The Sister Study follows sound, ethical research practices, and keeps all personal data safe, private and confidential. Women who join are not asked to take any medicine, visit a medical center, or make any changes to their habits, diet or daily life.

Says Sara Williams, “If every woman in the study looks like me – a middle-aged white woman with a desk job – we won't gain new information to benefit all women in the United States. Most of what we now know about breast cancer comes from studies of white women. The sad reality is that breast cancer knows no social, economic, or racial boundaries. It is my greatest hope that women from all walks of life will take part in this landmark study and help unravel the mystery of a disease that kills over 40,000 women in our country every year.”

Last Update 09.17.07

Program on Breast Cancer and Environmental Risk Factors
Cornell University, College of Veterinary Medicine
Vet Box 31, Ithaca, NY 14853-6401
Phone: 607.254.2893; Fax: 607.254.4730
Email: breastcancer@cornell.edu
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