Alma College

Informed Consent to Participate in Research

Study title: Exploring gendered norms and experiences of people with PCOS

Researcher[s]: Dr. Janelle Blazek, Jessica Skinner
We’re inviting you to take a survey for research. This survey is completely voluntary. There are no negative consequences if you don’t want to take it. If you start the survey, you can always change your mind and stop at any time.

What is the purpose of this study?
 We want to explore PCOS in relation to gender norms and experiences.

What will I do? This survey will ask questions about your demographics, your gendered traits, and your experiences with PCOS. The survey may take up to 52 minutes.

Risks:
- Some questions may be personal or upsetting. You can skip them or quit the survey at any time.
- Online data being hacked or intercepted: Anytime you share information online there are risks. We’re using a secure system to collect this data, but we can’t completely eliminate this risk.
- Breach of confidentiality: There is a chance your data could be seen by someone who shouldn’t have access to it. We’re minimizing this risk in the following ways:
     - Data is anonymous
     - We’ll store all electronic data on a password protected, encrypted cloud system.

Possible benefits: This study will help to increase social understanding on PCOS and gender. It has the potential to inspire future research as well. Individual participants are unlikely to benefit from participation in the study.

Estimated number of participants: We aim to get 100-200 participants.

How long will it take?
We estimate the survey will take up to 52 minutes to complete.

Costs: None

Compensation: None

Future research: Your data won’t be used or shared for any future research studies. 

Where will data be stored? On an encrypted and password protected cloud system.

How long will it be kept? Two years

Who can see my data?
- We (the researchers) will have access to de-identified data. This is so we can analyze the data and conduct the study.
- Agencies that enforce legal and ethical guidelines, such as The Institutional Review Board (IRB) at Alma College The Office for Human Research Protections (OHRP)
- We may share our findings in publications or presentations. If we do, the results will be de-identified. If we quote you, we’ll use pseudonyms (fake names).

Questions about the research, complaints, or problems: Contact Dr. Janelle Blazek at blazekjl@alma.edu or Jessica Skinner at skinner1jr@alma.edu

Questions about your rights as a research participant, complaints, or problems: For questions or concerns about your rights as a research subject, to obtain information or offer input, or to register a complaint about this study, you may contact (anonymously if you wish) Dr. Alex Montoye, the chair of the IRB, at montoyeah@alma.edu

Please print or save this screen if you want to be able to access the information later.
IRB #: R_1g7V3HHTklbAiW8
IRB Approval Date: 12/22/2023

Agreement to Participate Your participation is completely voluntary, and you can withdraw at any time.

To take this survey, you must be:
- At least 18 years old
- Medical or self-diagnosis of PCOS
     - A self-diagnosis means you have two of the three symptoms…
           - Irregular menstruation or lack of menstruation
           - High androgen levels evident in excess body hair or acne/oily skin
           - Multiple small cysts on the ovaries