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      Looking back in time: conducting a cohort study of the long-term effects of treatment of adolescent tall girls with synthetic hormones

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          Abstract

          Objective

          Public health research is an endeavour that often involves multiple relationships, far-reaching collaborations, divergent expectations and various outcomes. Using the Tall Girls Study as a case study, this paper will present and discuss a number of methodological, ethical and legal challenges that have implications for other public health research.

          Approach

          The Tall Girls Study was the first study to examine the long-term health and psychosocial effects of oestrogen treatment for tall stature.

          Results

          In undertaking this study the research team overcame many hurdles: in maintaining collaboration with treating clinicians and with the women they had treated as girls - groups with opposing points of view and different expectations; using private practice medical records to trace women who had been patients up to forty years earlier; and exploring potential legal issues arising from the collection of data related to treatment.

          Conclusion

          While faced with complex challenges, the Tall Girls Study demonstrated that forward planning, ongoing dialogue between all stakeholders, transparency of processes, and the strict adherence to group-developed protocols were keys to maintaining rigour while undertaking pragmatic research.

          Implications

          Public health research often occurs within political and social contexts that need to be considered in the planning and conduct of studies. The quality and acceptability of research findings is enhanced when stakeholders are engaged in all aspects of the research process.

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          Most cited references33

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          Adenocarcinoma of the vagina. Association of maternal stilbestrol therapy with tumor appearance in young women.

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            Tables for predicting adult height from skeletal age: revised for use with the Greulich-Pyle hand standards.

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              Diethylstilbestrol revisited: a review of the long-term health effects.

              To review the literature on the long-term health effects of exposure to diethylstilbestrol (DES) among women prescribed DES during pregnancy (DES mothers), among their children exposed inutero to the drug (DES sons and daughters) and among the progeny of these exposed sons and daughters (DES grandchildren). English-language articles were identified through MEDLINE and CANCERLIT searches and through review of the bibliographies of identified articles. All human studies relevant to long-term health effects of exposure to DES were reviewed. Descriptive data on existing DES cohorts were extracted from early publications. Risk estimates for health effects were extracted from published reports. An estimated 5 to 10 million Americans received DES during pregnancy or were exposed to the drug in utero. Exposure to DES has been associated with an increased risk for breast cancer in DES mothers (relative risk, < 2.0) and with a lifetime risk of clear-cell cervicovaginal cancer in DES daughters of 1/1000 to 1/10,000. The association between DES exposure and testicular cancer in DES sons remains controversial. Exposure to DES has also been linked to reproductive tract abnormalities in DES sons and daughters that consist of immune system disorders and psychosexual effects. No evidence for transgenerational effects currently exists. Recommendations for screening persons exposed to DES are reviewed. Further research is needed to define long-term health effects related to DES exposure. Such research would provide a basis for counseling persons exposed to DES and would further understanding of environmental and pharmacologic compounds similar to DES.
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                Author and article information

                Journal
                BMC Public Health
                BMC Public Health
                BioMed Central
                1471-2458
                2011
                25 November 2011
                : 11
                : Suppl 5
                : S7
                Affiliations
                [1 ]Mother and Child Health Research, La Trobe University, 215 Franklin St, Melbourne, Victoria 3000, Australia
                [2 ]Menzies Research Institute, University of Tasmania, Private Bag 23 Hobart, Tasmania 7001, Australia
                [3 ]School of Population Health, The University of Melbourne, Level 5, 207 Bouverie Street, Carlton, Victoria 3010, Australia
                [4 ]Department of Endocrinology and Diabetes and Centre for Hormone Research, Royal Children's Hospital and Murdoch Childrens Research Institute, Flemington Rd, Parkville, Victoria 3052, Australia
                Article
                1471-2458-11-S5-S7
                10.1186/1471-2458-11-S5-S7
                3247030
                22168546
                f903a2a9-0836-4471-ab45-188bbd04420c
                Copyright ©2011 Bruinsma et al; licensee BioMed Central Ltd.

                This is an open access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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                Research

                Public health
                Public health

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