What is the Y.W.H.H.S.?

The Young Women’s Health History Study is gathering information to identify factors that may protect women from breast cancer. We are focusing on understanding breast cancer in women younger than 50 years old. A total of 3,193 women residing in Los Angeles County, CA or Metropolitan Detroit, MI were enrolled in the study. Some of the participants are women who have been diagnosed with breast cancer and some of the participants are women who have not been diagnosed with breast cancer.

The participants in this study gave us a broad picture of their health over time and their life stories. The study includes interviews with women about their health and lifestyles. It also includes physical measurements, childhood photos (if available), biological samples (saliva and blood), and questions for their mothers or primary caregivers (if available). The information we gathered will help us to identify risk factors for breast cancer in young women.

Enrollment is currently closed for the YWHHS.

What does it mean to take part?

The study team met with participants twice at locations and times convenient for them.

Visit #1 will include:

  • An Interview. We asked women about their age, health, and childhood and adult lifestyle.
  • Physical Measurements (optional). We asked women permission to take their weight and other basic measurements, including height and waist circumference.
  • Childhood Photographs (optional). We asked women to locate a few photographs of themselves as a child. These photos are important to help us understand whether growth during childhood is related to women’s health as adults. We asked women for photos of them standing up at around age 6 (about 1st grade), age 9 (about 4th grade), age 12 (about 7th grade), age 15 (about 10th grade), and age 18. The photos were scanned directly into an encrypted study laptop during the interview; the photos never left participants’ possession. Only our research team will see these photographs. If requested, we also blocked participant’s facial features when we scanned the photos. Participants could still take part in the study, even if they couldn’t find any photos.
  • This visit will take about 2.5-3 hours.

Participants received $75 for completing Visit #1.

We also requested permission to (optional):

  • Ask participants’ mothers or primary caregivers to complete a short survey. This includes questions about the participant’s birth and childhood health and lifestyle.

          Mothers or primary caregivers received $10 as a thank you gift.

  • Contact the participant’s primary care doctor for mammogram information.
  • Request information from the participant’s birth certificates. This information will help us to get an accurate picture of women’s birth histories.
  • If the participant has had a breast cancer diagnosis, we requested a sample of the tumor tissue from the facility where it was examined and has been stored.

Visit #2 included:

  • Blood sample (optional)*. A certified technician drew a small amount of blood from the participant’s arm — approximately two tablespoons will be drawn — similar to a doctor’s visit.
  • This visit lasted about 20 minutes

Participants received a thank you gift of $25 for completing Visit #2.

*The saliva and blood samples will allow us to measure hormones, other proteins in the blood, and related genes.

Women who participated in the study could agree to participate in all or just some parts of the study.

Will information be kept private?

Yes! All information that would identify a woman participating in the study is kept strictly confidential. Our research team is carefully trained in methods that protect the identity of all participants.**

The names of all participants will be kept separate from all personal information. Names will not be kept with samples, and will not appear on any reports generated from this study.

The ethics review committees of all institutes involved in the study, as well as the health departments in the states of California and Michigan, have approved the human subject protection aspects of the Young Women’s Health History Study.

** All our research team members have been trained in research ethics and understand the federal laws that protect the confidentiality of the information provided by participants: Section 308(d) of the Public Health Service Act (42 USC 242M), the Privacy Act of 1974 (5 USC 552a), and the Confidential Information Protection and Statistical Efficiency Act (PL 107-347). By law we cannot release any information about participants.

Who is participating?

The women who take part in this study of younger women’s health were 20 to 49 years old at the time of their enrollment and come from Los Angeles County, CA or Metropolitan Detroit, MI.

The research study includes nearly 2,000 women diagnosed with breast cancer between 2010 and 2015 and nearly 1,500 women of similar ages who have not been diagnosed with breast cancer.

How were women selected?

Women who were diagnosed with breast cancer were randomly identified from each state’s Cancer Surveillance Program. State laws in California and Michigan require that all cancer diagnoses be reported so that research can be done to learn how to prevent cancer and improve cancer patients’ lives. More information about the Cancer Surveillance Programs can be found at http://seer.cancer.gov/registries/index.html.

Women who do not have breast cancer but are similar in age and race/ethnicity to participants diagnosed with breast cancer were randomly selected from the study areas. Our survey recruitment team visited randomly selected households to determine if a woman in the household was eligible to participate in this study.

General information:

Lydia Marcus
Research Assistant
Joseph J. Zilber School of Public Health
University of Wisconsin-Milwaukee