2024 Ace Community Survey

Title of Survey: 2024 Ace Community Survey

Principal Investigators: Tristan Miller, Caroline Bauer, Lauren Beach

Collaborating Institutions: Ace Community Survey Team in Collaboration with Northwestern University (Evanston, Illinois, USA)

Key Information about this survey:

The following is a short summary of this survey to help you decide whether to be a part of this survey. Information that is more detailed is explained later on in this form.

• The purpose of this survey is to obtain better information on the makeup of people who identify on the asexual spectrum, and to track any trends in health, education, mental wellbeing, in those communities over time.
• You will be asked to complete an anonymous survey.
• We expect that you will be in this survey for 30 minutes.
• The primary potential risk of participation is low. This survey includes questions about sensitive topics, including sexual activity, sexual violence, mental health, and drug use.  You may find some of these topics triggering or distressing.
• There is no direct benefit to participating in this survey, but you will contribute to our understanding of asexual spectrum communities.
• Data from this survey will be analyzed by the Ace Community Survey Team, a community-based volunteer organization. Data will also be available to researchers at Northwestern University who are collaborating with the Ace Community Survey Team on this survey. 
• All data will be collected in a secure REDCap instance housed at Northwestern University, and will be stored only on Northwestern University servers. This survey does not ask for personally identifiable information, such as name, location, or birthday.
• If you choose to allow it, the information you provide may also be shared with other researchers who have been properly vetted by the Ace Community Survey Team. You will be given the option to only allow your response be used by the Ace Community Survey Team, while excluding its use by any researchers.

Why am I being asked to take part in this survey?

We are asking you to take part in this survey because you are 15 years of age or older. You may participate in this survey whether or not you are on the asexual spectrum.

How many people will be in this survey?

We expect approximately 10000 people will be in this research survey.  

What should I know about participating in this survey?

• Whether or not you take part is up to you.
• You can choose not to take part.
• You can agree to take part and later change your mind.
• Your decision will not be held against you.
• You do not have to answer any question you do not want to answer. Most questions can be skipped, although a few may be required to complete the survey.

What happens if I say, "Yes, I want to be in this survey"?

• You will be asked a series of online questions via REDCap, a secure online data collection platform. The questions will be about your life experience and your experience with asexuality (or lack thereof). 
• The survey is taken completely online. You will remain completely anonymous for the duration of the survey. You will not be contacted by the survey team. 
• The survey should take approximately 30 minutes to complete. 
• Your response will be included in analysis by the Ace Community Survey Team.
• You will be able to indicate whether you give us permission to share your information with other researchers, or whether you prefer your information is only used by the study team in community-focused reports.

What happens if I say, "Yes, I want to allow my response to be used in research"?

• When researchers request data from the Ace Community Survey, the Ace Community Survey Team will properly vet the researchers. Vetting includes having conversations with the researchers to ensure they are capable of conducting ethical, affirming research related to asexual people. Researchers that pass vetting will be provided with data that includes your response.
• We will only share data that has been completely de-identified. No researchers will ever be able to identify you from your responses. Your participation will remain completely anonymous.

What happens if I agree to participate, but I do not want my information to be shared with other researchers?

• If you choose not to allow your response to be used in research, it will still be included in analysis by the Ace Community Survey Team, but will be excluded from data provided to external researchers. Investigators at Northwestern University will have access to the data, but will not be able to use the data to publish research.
• The Ace Community Survey Team will use responses to create public reports based on analysis of aggregate data.

Will being in this survey help me in any way?

There is no direct benefit for participating in the survey. However, your participation may contribute to the collection of valuable information on the demographics and experiences of members in the ace community, including asexual, demisexual, gray-asexual, and related identities and creating a valuable pool of data for future ace community activists and researchers. It is our hope that these data can be used to improve the health and wellbeing of asexual communities.

Is there any way being in this survey could be bad for me?

The primary potential risk of participation is low. This survey may include questions about sensitive topics, including sexual activity, sexual violence, mental health, and drug use.  You may find some of these topics triggering or distressing.

The study team has taken many steps to protect the information you share with us (see the section: "How Will My Information Be Protected" below). While we do not anticipate this happening, it is always possible that your data could be lost or stolen. If this were to happen, there is a possibility you could be identified in the dataset. Based on the steps we have taken to protect your information, we believe the risk of this occurring is incredibly low.

What happens if I do not want to be in this survey, or I change my mind later?

Participation is voluntary. You can decide to participate or not to participate.  You can leave the survey at any time and it will not be held against you.

If you leave the survey before submitting your response, no data will be collected.

Once you submit your response, it will be shared with the survey team. 

How will my information be protected?

To protect your privacy, we will not collect any information which could identify you. Your participation in this survey is therefore completely anonymous. Your survey response will not be linked to you in any way.

All data will be collected in a secure REDCap instance housed at Northwestern University, and will be stored only on Northwestern University servers. Only individuals who have completed training in human subjects research and who have been approved to view data stored in these locations by the Northwestern University IRB will be able to do so.

Information will only be publicly shared through official materials produced by the Ace Community Survey Team or, if you agree to have your data used in research, through research products such as peer-reviewed scientific papers and conference presentations.

The data will be saved until the Ace Community Survey Team no longer exists.

Who will have access to the information collected during this survey?

Efforts will be made to limit the use and disclosure of your personal information, including survey records, to people who have a need to review this information. We cannot promise complete secrecy.

If you choose to participate in this study, the following individuals may view the information you share with us:

• University officials, government officials, study funders, auditors, and the Institutional Review Board may need access to the survey information to make sure the survey is done in a safe and appropriate manner. 
• Members of the Ace Community Survey Team who have been approved to view your information by the Institutional Review Board at Northwestern University.
• Researchers at Northwestern University who have been approved to view your information by the Institutional Review Board at Northwestern University.

If you allow your response to be used in research, information about you may be used or seen by researchers who have been properly vetted by the Ace Community Survey Team. Because all responses are anonymous researchers will only receive de-identified data and will not be able to identify you in any responses.

How might the information collected in this survey be shared in the future?

We will keep the information we collect about you during this survey for study recordkeeping and for potential use in future research projects.  We will create public reports based on analysis of the overall data. These reports will include aggregated data and no individuals will be identifiable in the information they share. Reports will be published via our website at https://acecommunitysurvey.org/.

If you allow your response to be used in research, your response to this survey may be shared with the research community, with journals in which study results are published, with journal readers, and with databases and data repositories used for research. 

Will I be paid or given anything for taking part in this survey?

There is no payment or reimbursement for participating in this survey.

Who can I talk to?

If you have questions, concerns, or complaints, you can contact the Principal Investigators Tristan Miller at tristanlmiller@gmail.com, Caroline Bauer at Bauer1331@gmail.com, Lauren Beach at lauren.beach@northwestern.edu, and the Ace Community Survey's email at acecommunitysurvey@gmail.com

This research has been reviewed and approved by the Northwestern University Institutional Review Board ("IRB") - an IRB is a committee that protects the rights of people who participate in research studies. You may contact the IRB by phone at (312) 503-9338 or by email at irb@northwestern.edu if:

• Your questions, concerns, or complaints are not being answered by the research team.
• You cannot reach the research team.
• You want to talk to someone besides the research team.
• You have questions about your rights as a research participant.
• You want to get information or provide input about this research.

If you want a copy of this consent for your records, you can print it from the screen.

If you cannot print the consent and would like a copy for your records, contact the Principal Investigator with the contact information above.

If you wish to participate, please click the "I Agree" button and you will be taken to the survey.

If you do not wish to participate in this survey, please select "I Disagree" or select X in the corner of your browser.