FREQUENTLY ASKED QUESTIONS
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 4,000 women will be enrolled from Los Angeles County, CA or Metropolitan Detroit, MI. Women who have not had breast cancer and women who have been diagnosed with breast cancer will be asked to participate.
The participants in this study will help give us a broad picture of their health and lifestyles over time. 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 (also if available). The information we gather will help us identify risk factors for breast cancer in young women.
The study team will meet with participants 2 times at locations and times convenient for them.Visit #1 will include:
- An Interview. We will ask about your age, health, and childhood and adult lifestyle.
- Physical Measurements (optional). We will ask to take your weight and other basic measurements, including weight, height and waist circumference.
- Childhood Photographs (optional). We will ask participants 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 are hoping participants can find a couple of photos 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. We are looking for pictures that show participants from head-to-toe at these different ages. They can be snapshots, family photos, photos with friends, etc. The photos will be scanned directly into an encrypted study laptop during the interview, so will never leave participants’ possession. Only our research team will see these photographs. If requested, we can also block participant’s facial features when we scan the photos. Participants can still take part in the study, even if they can’t find any photos.
- This visit will take about 2.5-3 hours.
Participants will receive $75 for completing Visit #1.We’ll also request permission to (optional):
- Ask participants' mothers or primary caregivers to complete a short survey. This will include questions about the participant’s birth and childhood health and lifestyle.
- 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 will request a sample of the tumor tissue from the facility where it was examined and has been stored.
Visit #2 will include:
- Blood sample (optional)*. A certified technician will draw a small amount of blood from the participant’s arm—approximately two tablespoons will be drawn—similar to a doctor’s visit.
- This visit will take about 20 minutes
Participants will receive 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 participate in the study can agree to participate in all or just some parts of the study.
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.
The women who take part in this study of younger women’s health will be 20 to 49 years old and come from Los Angeles County, CA or Metropolitan Detroit, MI.
The research study will include 2,000 women diagnosed with breast cancer between 2010 and 2015 and 2,000 women of similar ages who have not been diagnosed with breast cancer. Participation is entirely voluntary–but if you have been asked to participate, please consider it. This study is extremely important!
Women who have recently been diagnosed with breast cancer will be 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 will be randomly selected from the study areas. Our survey recruitment team will visit randomly selected households to determine if a woman in the household is eligible to participate in this study. We will ask about the age, gender, and race/ethnicity of female household members. If a woman is identified to be eligible, we will ask to speak with her to inform her about our study and to ask her to participate.
If we contact you, we hope you will agree to participate in this important study. We need your help to reach our goal of enrolling 4,000 women!
Patti Gillette, MPH
Joseph J. Zilber School of Public Health
University of Wisconsin-Milwaukee