@article{a6248ff009a9496494efffde76acf64b,
title = "The time is now for a new approach to primary ovarian insufficiency",
abstract = "Objective: To articulate the need for a new approach to primary ovarian insufficiency. The condition, also known as premature menopause or premature ovarian failure, is defined by the presence of menopausal-level serum gonadotropins in association with irregular menses in adolescent girls or women younger than 40 years. It can be iatrogenic as related to cancer therapy or may arise spontaneously, either alone or as part of a host of ultrarare syndromes. In a large percentage of spontaneous cases no pathogenic mechanism can be identified. Design: Literature review and consensus building at a multidisciplinary scientific workshop. Conclusion(s): There are major gaps in knowledge regarding the etiologic mechanisms, psychosocial effects, natural history, and medical and psychosocial management of primary ovarian insufficiency. An international research consortium and disease registry formed under the guidance of an umbrella organization would provide a pathway to comprehensively increase basic and clinical knowledge about the condition. Such a consortium and patient registry also would provide clinical samples and clinical data with a goal toward defining the specific pathogenic mechanisms. An international collaborative approach that combines the structure of a patient registry with the principles of integrative care and community-based participatory research is needed to advance the field of primary ovarian insufficiency.",
keywords = "Primary ovarian insufficiency (POI), diminished ovarian reserve, infertility, integrative medicine, menstrual cycle, participatory research, patient registry, premature menopause, premature ovarian failure (POF), research consortia, sex steroid deficiency",
author = "Cooper, {Amber R.} and Baker, {Valerie L.} and Sterling, {Evelina W.} and Ryan, {Mary E.} and Woodruff, {Teresa K.} and Nelson, {Lawrence M.}",
note = "Funding Information: To study the onset and progression of primary ovarian insufficiency in girls and young women is currently an intractable problem. The subject must be addressed by a multidisciplinary team engaged in an extensive and far-reaching cohort study of the normal menstrual cycle in women. Basic reproductive scientists must work hand in hand with clinicians and the entire community of primary ovarian insufficiency touched by the disorder. The Oncofertility Consortium is a recently developed model that is challenging old notions about a disease, engaging physicians across disciplinary boarders, and beginning to solve an intractable problem. We believe the Oncofertility Consortium can serve as a template for a primary ovarian insufficiency consortium and patient registry, and the path trod by the research community in oncofertility-related research would be well suited to accelerate activity in primary ovarian insufficiency. Technologic advances are facilitating the development of research consortia and patient registries. For example, collaborations are now possible that in the past would have been either impossible or, at best, extremely expensive. As a beginning, our group, with assistance from NIH information technology support, has created a wiki site to allow for better communication. Meetings over the Internet are feasible and much less expensive than in-person meetings. We are committed to developing a registry and to using state-of-the-art information systems to aid in efficient collaboration. For example, one system under consideration is the National Institutes of Health Biomedical Translational Research Information System (BTRIS), which is currently in development (40) . It is a powerful new tool for investigators to access research data, develop streamlined mechanisms for protocol reporting and data analysis, and reuse data for hypothesis generation and collaboration. One other system under consideration is the caGrid 1.0 (41) . Although the caGrid 1.0 is designed for cancer research, it could provide a framework that can benefit the entire biomedical community. Many features of this system could be adapted to allow integration and analysis of large-scale data for the primary ovarian insufficiency community. ",
year = "2011",
month = may,
doi = "10.1016/j.fertnstert.2010.01.016",
language = "English (US)",
volume = "95",
pages = "1890--1897",
journal = "Fertility and sterility",
issn = "0015-0282",
publisher = "Elsevier Inc.",
number = "6",
}