Passion for participatory research on the menstrual cycle

Abstract

A two-day symposium entitled "The Menstrual Cycle and Adolescent Health" was held in Potomac, Maryland in mid October 2007. Groups sponsoring the meeting included the Department of Health and Human Services (DHHS), the National Institutes of Health (NIH), the National Institute of Child Health and Human Development, the American Society for Reproductive Medicine, the NIH Office of Research on Women's Health, the NIH Office of Rare Diseases, the U.S. Food and Drug Administration Office of Women's Health, the DHHS Office of Women's Health, and Rachel's Well, Inc. Attendees included patients, patient advocates, and experts from a variety of fields and disciplines. The effort identified areas in which there are only sparse data from which to create evidence-based recommendations for management of menstrual problems in young adolescents. In a final session of the meeting, participants worked together to develop a manifesto regarding research on the menstrual cycle in adolescents, which is the subject of this report. The group reached two major conclusions. First, there is need for a new research model that integrates grass roots community passion for participatory research with research planning and regulatory oversight. Second, there is a need for a coordinated research effort on the menstrual cycle and its disorders in adolescents. This could initially take the form of a Study of Puberty across the Nation (SPAN), similar to the Study of Women across the Nation (SWAN) that addresses the normal menopausal process.

Figure 1

Models for community initiated and investigator initiated research.