Over the next five years, the Centre for Menstrual Cycle and Ovulation Research (CeMCOR) is focusing on the concerns and therapy needs of Women Living with Polycystic Ovary Syndrome (WLWP). (WLWP are also living with what CeMCOR calls Anovulatory Androgen Excess, or AAE). We recognize that it is likely we need to develop a new and innovative therapy. However, in order to successfully test a new therapy, we need to know women’s preferences and willingness to try it.
We also need WLWP’s to tell us which of the polycystic ovary syndrome experiences are most important, and most difficult, and to share their attitudes toward, and use of, “the Pill” (combined hormonal contraceptives).
Finally, we seek WLWP to express their interest in participating in several different kinds of research studies:
- A 6-month pilot study of a new treatment for women living with PCOS (cyclic progesterone with spironolactone) in which you would know what you were taking
- A 1-year randomized trial where you would know what you were taking but not have a choice of which group—with current standard therapy (“the Pill”) versus a new therapy (cyclic progesterone with spironolactone); to be in this study, if you are sexually active with a man you would need to use provided, non-hormonal contraceptive methods
- A 6-month follow up to the randomized trials in which you would keep records but go without therapy for 6 months to see how long the benefits of each type of treatment last.
You are free to take this survey or not. This survey is anonymous. We do not have any ability to assess your identity and commit to not seeking any IP addresses. If required to make raw data publicly available, it would be done without including any identifying personal information. However, if you choose to like or follow the page, or any similar activity such as tweeting about the page, your information would be publicly identified and it would be your responsibility to protect your privacy.
By completing the questionnaire, you are consenting to participate in this research. You are also consenting to CeMCOR’s use of your responses to guide further research and teaching, and to report these data in scientific publications.
If you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the Research Participant Complaint Line in the UBC Office of Research Ethics at 604-822-8598 or, if long distance, e-mail RSIL@ors.ubc.ca or call toll free 1-877-822-8598.
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