Breast Cancer Awareness Month 2022: The Impact of the Sister Study

October is Breast Cancer Awareness Month, an annual campaign to raise awareness about the impact of breast cancer. This month, DLH is joining the conversation to share the important impact of the Sister Study, a national study focused on investigating the role of genes and environment in the development of breast cancer.

From study design through implementation, DLH combines data-driven analysis and a people-first approach to recruit and retain target populations for vital public health studies. DLH has made significant contributions over the last 18 years to the National Institutes of Environmental Health Sciences (NIEHS) Sister Study, a longitudinal cohort of more than 50,000 women in the United States who, at enrollment, did not have breast cancer themselves but had a sister with breast cancer. The DLH Team strives to advance science and improve health through the Sister Study by engaging multiple stakeholders to provide full research lifecycle support including participant engagement, biospecimen assay, survey data collection, and health outcome validation, as well as data collection, management, and analysis.

As the Sister Study’s repository of data and biospecimens has grown, it has become an invaluable research resource to investigators worldwide, as evidenced by more than 270 published articles. Our approach values good stewardship of these resources for NIEHS while promoting researcher partnership and ease of collaboration.

At the onset of the study, DLH amassed a volunteer army of over 10,000 individuals and developed a strategic outreach and communication plan to recruit 50,884 women throughout the United States and Puerto Rico to study genes and environment and has continued to engage and collect important information from participants since 2004.  Nearly 20 years into the study, participant response rates have consistently exceeded 92%. An African-American targeted retention program also raised their already high retention rate by 1.9% to ensure their valuable representation in research of breast cancer, a disease that is often more aggressive and harder to treat in this group of women.

The Sister Study is currently tracking the health of women in the cohort. Participants complete health updates each year, as well as detailed questionnaires about health and experiences every two-to-three years, a questionnaire which recently collected information on the effects of COVID-19. Research in the Sister Study focuses on the causes of breast cancer and other health issues in women, as well as factors that influence the quality of life and outcomes after a breast cancer diagnosis. Learn more about the Sister Study and our DLH team contributions.

Breast Cancer Awareness Month helps educate individuals on what they can do to be proactive with their breast health. Knowledge and early detection save lives. Explore more breast cancer resources here.