Sister Study Exceeds Recruitment Goal: Now The Real Work Begins

September 29, 2011

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The National Institute of Environmental Wellness Sciences (NIEHS), component of the National Institutes of Health, has many reasons to celebrate this October as it recognizes Breast Cancer Awareness Month. The NIEHS Sister Study began recruiting ladies for this landmark study in the course of Breast Cancer Awareness month in October 2004 and this October has reached a milestone. It has recruited nearly 51,000 females from all walks of life, whose sisters had breast cancer, to participate in this long-term study which is focusing on uncovering environmental and genetic factors that influence breast cancer risk. These sisters and researchers have joined together in a long-term commitment to assist prevent breast cancer.

“What an amazing group of ladies we have enrolled in this study. Every single one of them should be congratulated for their commitment to participating in study to assist identify factors that lead to breast cancer,” said Dale Sandler, Ph.D., chief of the Epidemiology Branch at NIEHS and principal investigator of the Sister Study. “We have exceeded our recruitment goal and I’m thrilled using the diversity of age, race, ethnicity and education represented in the cohort.”

The women come from all 50 states as properly as Puerto Rico, and include ladies with different ethnic, educational and employment backgrounds. Since the study began in 2004, 50,884 women have enrolled including 4,438 African-American girls, two,631 Hispanic females, and 1,160 ladies from other racial/ethnic groups. The study also contains 8,230 girls aged 65 and over, and 7,212 having a high school degree or less. All of the females inside the study have a sister who has been diagnosed with breast cancer. Researchers hope to uncover clues about causes of breast cancer and other diseases by comparing girls who develop breast cancer or other conditions while in the study to those who remain disease-free.

“We owe a debt of gratitude to our participant volunteers who worked so hard to recruit girls into the study and to our partner organizations that lent us their support,” added Lisa DeRoo, Ph.D., lead investigator of the study. These organizations included the American Cancer Society, the Susan G. Komen for the Cure, the Sisters Network, the Intercultural Cancer Council, the Love/Avon Army of Girls, the Breast Cancer Network of Strength, and many much more local and national groups interested in breast cancer and women’s well being.

Sandler points out that sustaining the same level of enthusiasm as the project moves forward is going to be the next challenge. “What we require now is for everyone to realize this is really a 10-year study and that the work is really just beginning,” Sandler said. The participants are asked to complete a yearly one-page update by mail, e-mail or phone. They are also asked to share more detailed information about adjustments in their health, jobs, and lifestyle every two or three years.

“Improvements in breast cancer survival depend on study participation so that we can learn why breast cancer begins and what controls cancer behavior,” stated Lisa Carey, M.D., medical director of the University of North Carolina Breast Center. “The Sister Study will need to have its participants to stay involved and to respond to inquiries about their well being and experiences, especially if they are diagnosed with breast cancer.”

Sandler adds, “Just like women everywhere, some females who joined the Sister Study will, unfortunately, be diagnosed with breast cancer or other conditions while they are portion of the study. It is by comparing those who develop breast cancer to those who do not that we is going to be able to learn what might lead to breast cancer.”

The volunteers in the Sister Study are at increased risk since they already have a sister who has had breast cancer. So far, approximately 900 participants have reported getting breast cancer since the study began.

The study collects additional information about their diagnosis and therapy from those sisters and their doctors. Such details are critical components of the study that will aid determine the role that factors, such as occupational and environmental exposures, lifestyle, diet, stress, and genes might play in remedy outcomes and illness risks, and allow researchers to identify risk factors for specific types of breast cancer.

Participants, such as Jean Peelan in Florida, who has been participating in the study since its 2004 inception, recognize the value of the study and plan to stay involved. “Continuing to participate inside the Sister Study has been such an honor. I feel very good that I am contributing to this incredible study, making such a difference, to ensure that my six granddaughters may not have to face breast cancer in their future.”

The study has already reported some preliminary findings about how factors such as weight and perceived stress may influence health, and investigators are beginning to use the biological samples participants contributed to learn how some genetic factors may affect breast cancer risk. The researchers point out key outcomes on gene-environment interactions may be just a few years away.

Under the direction of Clarice Weinberg, Ph.D., chief of the Biostatistics Branch at the NIEHS, the researchers are also using the Sister Study as a way to greater comprehend early-onset breast cancer.

They hope to enroll about 1,600 families, where there was a sister who was under the age of 50 when they had been diagnosed with breast cancer, to participate in an offshoot of the Sister Study called the “Two Sister Study.” The sister with breast cancer and her parents will be invited to participate along with the sister who is already part of the Sister Study.

“With women’s participation in analysis like the Sister Study as well as the Two Sister Study, we hope to be one step closer to providing far better care to females with breast cancer and finding the causes of the illness,” stated Susan Love, M.D., president of the Dr. Susan Love Investigation Foundation.

“Recruiting far more than 50,000 Sister Study participants in five years was a huge accomplishment for the NIEHS,” stated NIEHS Director Linda Birnbaum, Ph.D. “Over the years, we’ve received substantial support from a sister NIH agency, the National Center on Minority Well being and Health Disparities, whose support enabled our researchers to develop unique strategies to recruit a diverse cohort. We appreciate the value that they and our many community partners and participants place on the promise of this study, and look forward to providing a lot more insight into how to prevent breast cancer and other diseases that are influenced by the environment.”

National Breast Cancer Awareness Month is dedicated to increasing awareness of the importance of early breast cancer detection. To learn a lot more about the Sister Study and the Two Sister Study, visit http://www.sisterstudy.org, (for Spanish, visit http://www.sisterstudy.org/spanish/index1_spa.htm).

The NIEHS supports analysis to understand the effects of the environment on human well being and is portion of NIH. For a lot more information on environmental well being topics, visit our Web site at http://www.niehs.nih.gov.

Source
National Institutes of Health

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