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The DES Follow-Up Study investigates the long-term health consequences associated with exposure to diethylstilbestrol (DES). Since 1992, the National Cancer Institute, in collaboration with research centers throughout the United States has been conducting the DES Follow-Up Study of more than 21,000 mothers, daughters, and sons.

* The DES Action and DES Cancer Network links are not associated with NCI.

STUDY UPDATE: The influence of Prenatal DES Exposure on the Associations of Reproductive Factors and Osteoporosis

Estrogen is critical for bone formation and growth in women. Exposure to estrogens occurs continually during menarche, pregnancy and menopause. The purpose of this study was to investigate the impact of prenatal exposure to diethylstilbestrol (DES), a synthetic estrogen, on the associations between age at menarche, age at menopause, and years of menstruation and the diagnosis of osteoporosis. Continue reading


Special Thanks to Our Study Participants

The scientists and study coordinators at the National Cancer Institute and five study centers would like to thank each participant who completed the 2011 DES Follow-up Health Questionnaire. Your cooperation over the years and the information you have provided continues to allow the study of the effects of DES and possibility of new health risks.


Study of Genetic Markers in DES Exposed Daughters – Pilot Study

Environmental scientists consider DES the ultimate model for studying the impact of exposure to environmental endocrine disruptors (chemicals that interfere with the body’s hormone system) during fetal development. Over three decades of studies in laboratory animals have raised multiple possible biologic effects that could be responsible for the poor health outcomes seen in DES exposed daughters, with one of the most promising indicating that prenatal exposure to DES causes persistent epigenetic changes (epigenetic changes occur in the cells during fetal development and typically turn on or off genes). In addition, some studies in laboratory animals indicate a possible effect of DES on hormone concentrations in women who were prenatally exposed.

Researchers at the National Cancer Institute and Boston University are attempting to study whether genetic changes and hormone concentrations differ between women who were and were not prenatally exposed to DES. Initially, a small pilot study of 60 women (30 who were exposed to DES and 30 who were not) is currently under way. Blood samples are being drawn from women participating in our long-term DES Follow-up Study of the health effects of DES exposure. If this pilot study is successful we plan to study this question in a larger group of women. The findings of this pilot study may have profound implications for the ways in which endocrine disruption in the fetus influences human health in later life.


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