April 10, 2012

DES Action Collecting Information on Health Issues in People Exposed to DES

DES Action, an organization that provides information, education, and support related to DES exposure, is conducting a health history survey to learn more about the health issues faced by women who took DES and the daughters and granddaughters and sons and grandsons of those women.

DES (diethylstilbestrol) is a drug that used to be prescribed to women to prevent miscarriages and preterm births, and is now known to increase the risk of certain cancers and other adverse effects in the sons and daughters of women who took the drug. Researchers are now starting to look for possible effects in the women’s granddaughters and grandsons.

June 15th is the deadline for all surveys to be completed and returned. The survey is not a formal scientific study, so there is not the usual informed consent process with privacy information. DES Action hopes the collecting these surveys will help them to identify some trends and concerns to share with researchers who may be able to follow-up with further study.

Related information on DES:
DES: 40 Years of Research with More to Learn – recent article in the newsletter of the National Women’s Health Network
The DES Follow-up Study – DES timeline, health risks, and information in the National Cancer Institute’s “Linkage” newsletter.


3 Responses to “DES Action Collecting Information on Health Issues in People Exposed to DES”

  1. Dianne Says:

    If this is for the health problems with DES daughters, I can give you an earfull. Where do I find the survey to complete? I would love to see if I’m the only one with all these problems.

  2. linda Says:

    I filled one out last night and I have 95 % of the illness ‘s questioned! Just had a colposcapy looking for cancer again!

  3. Kiki Says:

    hi Dianne,

    Yes, the survey is looking at the health problems of DES daughters. To get to the survey, click on the link “health history survey” in the post above; here’s the direct url: http://desaction.org/onlinesurvey.htm.

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