There is a registry at the University of Chicago of patients with Clear Cell Adenocarinoma (CCA). [The email address on the UChicago site is incorrect. The email below is correct.] If you’ve been diagnosed with CCA, you can sign up for the registry and get additional help, including information about specialists in your area, from the team at the registry.
Here is the explanation of the registry given on the UChicago website:
What is the Registry?
The Registry for Research on Hormonal Transplacental Carcinogenesis (the Registry) is an international research registry of cancer patients with clear cell adenocarcinoma (CCA) of the vagina and/or cervix or other specific gynecologic cancers who may or may not have been exposed to diethylstilbestrol (DES) or other synthetic hormones in utero (while still in their mother’s womb).
The Registry was established in 1971 at Massachusetts General Hospital by Dr. Arthur L. Herbst and colleagues to investigate the development of CCA of the vagina and/or cervix in young women born since 1940 and in 1976 it was moved with Dr. Herbst to the University of Chicago. The development of most of the vaginal tumors has been linked to the ingestion of DES during pregnancy. Because these tumors are rare in young women, the Registry was established to centralize data collection on this rare carcinoma. Varying amounts of information on the epidemiology, clinical aspects and pathology of these tumors has been obtained.
Who to Contact to Register:
Diane Anderson, Program Administrator
Phone: (773) 702-6671
For more information, visit the Registry website.