Background and Purpose

Research on women+ (of all genders) living with Polycystic Ovary Syndrome (PCOS) is quite limited and there are many open questions that still need to be answered. We are interested in learning from your experiences and perspective to help inform a future PCOS treatment approach. Our recent work looked at providing progesterone (estrogen’s partner hormone) to 26 women with PCOS. It showed important promise for improving PCOS quality of life.

We invite you to take this survey to help us understand your willingness to try a new treatment approach compared to the conventional hormonal contraceptives (the Pill) and whether you have any concerns that we need to consider. Your responses will help us plan a future study to advance care for women+ with PCOS.

Time Commitment

This survey is expected to take you no more than 12 minutes.

Potential Benefits

Participation in this survey offers you the chance to contribute to the development of more effective treatments for women with PCOS. It also allows you to reflect on your treatment preferences and increase your awareness of both current and emerging options for managing PCOS.

Potential Risks

There are no known risks to completing this survey and all your responses will be anonymous. If reflecting on your experiences with PCOS and its treatments could bring up emotions, especially if you’ve faced challenges or frustrations, please contact the British Columbia Mental Health Information Line at 1-800-661-2121 or 604-669-7600.

Confidentiality

Your responses to this survey are completely anonymous. We pledge to never collect your IP address, nor make any effort to identify you. The results will be presented by groups (say those 25-30 years old) and not by individuals. We will never contact you nor share your personal information. Results of this survey will be published in a compiled format to ensure no individual can be identified. De-identified data may also be shared publicly to meet current open science/open-access requirements.

Participation

You must be 19 years or older to participate, have experience with PCOS and able to read English. Your participation in this study is voluntary, and you are free to withdraw from this study by closing the survey at any point prior to submission. Any responses provided before you close the survey without submitting, will be excluded from the analysis. This survey study is being conducted for research purposes. If you submit this survey, you are providing informed consent to participate in this CeMCOR survey, and once submitted these data cannot be withdrawn.

Open Access

The main study findings will be published in a relevant academic journal and the study results can be provided to you up on request. Some journals may request for the survey data to be published for other researchers to access. As the survey data will not include any information that can directly identify you (i.e., no personal identifiers are collected), any data that may be published and openly accessible will not contain any identifying information. Once data are published open access, this information will remain available online.

Your Rights

If you have any questions or desire further information about this study before or during participation, you can contact the principal investigator, Dr. Jerilynn Prior at jerilynn.prior@ubc.ca. 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. Please refer to the Ethics ID: H25-01055.