Young Women’s Breast Cancer Program

Identification of novel genetic factors that contribute to risk for breast cancer

Nearly 2,000 young survivors from around the country have enrolled in our ongoing research study. Women diagnosed with breast cancer < 40 years of age are invited to participate with the goal to discover the yet unidentified genetic factors that contribute to breast cancer risk in young women. We are well on our way of reaching our goal of inviting 5,000 young survivors to participate. Over 14 percent of the study group is more than 10 years out from their diagnosis (current age 50-75 years). Because so few studies are focused specifically on early-onset breast cancer, your participation in these investigations has a significant impact. Thank you!

Gene discovery studies require very large numbers of people to participate in order to validate statistically significant findings. With the nearly 2,000 women who have participated thus far, we have initiated state of the art studies to identify the genetic factors that contribute to breast cancer in young women. In collaboration with the Washington University Genome Institute, multiple approaches are being used to take advantage of the diverse population of women enrolled to date. In contrast to the tumor genomic studies reported on the previous pages, our research is focused on inherited genetic alterations leading to breast cancer.

Watch for the next edition to monitor our study progress. Contact Jennifer Ivanovich at 314-454-5076 or by email at if you wish to participate.

New Study Collaborators

Paul Goodfellow, PhD, and Jennifer Ivanovich, MS, continue to lead the study. In September 2011, Dr. Goodfellow moved to Columbus, Ohio to build a women’s cancer research program at the James Cancer Center. As a result, our study can now capitalize on the cancer expertise, at BOTH the Siteman Cancer Center at Washington University School of Medicine and the James Cancer Center at the Ohio State University. Robert Pilarksi, MS, cancer genetic counselor, and Jeffrey Parvin, MD, PhD, expert in systems biology methods for the discovery of breast cancer genes, have joined our research team.

New Collaborative Research Study

Kimberly Kaphingst, ScD, an expert in health literacy, cancer communication and public health genomics at Washington University, is leading a new study focused on the communication of whole genome sequencing (WGS) test results. Some essential questions that will be examined include: what do women know about WGS, how and when do they want WGS information communicated, and what types of information do young survivors want to learn from WGS? Women diagnosed with breast cancer < 40 years will be invited to participate in this innovative study. One-on-one focused interviews will be held with women who live in Missouri and Southern Illinois. An on-line questionnaire will be distributed at the end of 2013, to young breast cancer survivors who live throughout the country. Contact Mackenzie Ray at or 314-747-5657 with questions about this study or to participate.