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.

FIGURE 1

Models of integrative and traditional systems of research and health care, viewed from the patient perspective. In each panel the solid black circle represents the patient. Each straight line represents a specialized area of research or health care, for example, bone health, reproductive health, emotional health, genetic health. In the traditional model for research and health care depicted on the left, the patient resides in one domain at a time, and frequently the data collection and relevant health care are carried out in one domain. In an integrative model for research and health care, depicted on the right, various domains come to meet the patient, and the result can be data and relevant health care coming together in one system and in one database.

FIGURE 2

Diverse stakeholders organized as a consortium can undertake an enterprise beyond the resources of any one member. Such an approach can create synergistic solutions for women with primary ovarian insufficiency (POI), a complex and multifaceted chronic disease.

FIGURE 3

Model involving Rachel’s Well, Inc., a 501(c)(3) nonprofit organization, as the umbrella organization for the primary ovarian insufficiency (POI) consortium. The responsibility of a federal liaison is to formally represent the interests of the government for certain activities with outside organizations. In such a capacity a federal liaison serves in a role as a nonvoting, nonfiduciary agency representative. A federal liaison does not participate in the internal or business affairs or fund-raising activities of the outside organization.