The University of Chicago Cohort
University of Chicago Department of Obstetrics and Gynecology
5841 S. Maryland Avenue, MC 2050
Chicago, Illinois 60637
Phone number: 773-702-6670/1
About the Study:
Diethylstilbestrol (DES) is a medication that was given to women in the U.S. in the 1950's and 60's to prevent miscarriage. Women exposed to DES before birth have an increased risk of developing a rare form of cancer (CCA of the vagina/cervix), and exposed men have an increased risk of developing reproductive tract abnormalities. There are two separate cohorts being studied.
The first is a group of mothers, sons and daughters reassembled in the early 1970s from a group of mothers who were part of an earlier study conducted in 1951-1952 by Dr. Dieckmann. Dr. Dieckmann's study was set up to evaluate the success of DES in preventing miscarriage and other complications of pregnancy in a randomly selected group of women. The purpose of the current research program is to update the health histories of those who were in the Dieckmann study, their children and grandchildren. This information has been collected through several rounds of questionnaire surveys.
Clear Cell Adenocarcinoma Registry
The second cohort is a group of women who have been diagnosed with clear cell adenocarcinoma (CCA) of the vagina and/or cervix, both DES-exposed and unexposed. They are part of the Registry for Research on Hormonal Transplacental Carcinogenesis (The Registry), established in 1971 by Dr. Arthur Herbst and colleagues after the discovery of the association between CCA and exposure to DES before birth. The Registry, which consists of women from the U.S. and from other countries, provides a unique data source for investigating and monitoring this rare cancer and for studying the underlying mechanisms of cancer formation.
About the Principal Investigator:
The Principal Investigator of this research team is Arthur L. Herbst, M.D., the Joseph Bolivar De Lee Distinguished Service Professor (emeritus)in the Department of Obstetrics and Gynecology at the University of Chicago, and former chairman of the department for over 25 years. Dr. Herbst, along with several colleagues in 1971, discovered the link between DES exposure and CCA of the vagina and/or cervix in young women. Currently, the DES research team is involved in the collection and analysis of data from health questionnaires completed by sons, daughters and the children of DES daughters (third generation granddaughters). The investigators are also updating the health histories of CCA survivors to explore issues of health and quality of life among those who have survived gynecological cancers, with the hope of improving the quality of information available and the delivery of that information to those who have been and those who are yet to be diagnosed with these cancers.
About the Co-Principal Investigator:
Dr. Nita K. Lee, Co-P.I., is an Assistant Professor in the Department of Obstetrics and Gynecology at the University of Chicago. She is a gynecologic oncologist who specializes in the treatment of gynecologic cancers including ovarian, uterine and cervical cancers. Dr. Lee also has a master's degree in public health. She joined the team of researchers studying DES exposure in the summer of 2010.