Information for Research Participants

Taking part in research is a personal choice. Before you decide, you should have clear information about what the study involves, how your information will be used, and who to contact with questions or concerns.

This page explains general aspects of research participation. Each study’s information sheet and consent form provide the details that apply to that particular study.

Those interested in being contacted for IMF research opportunities can fill out the form on the following page: https://misophoniafoundation.com/research-participants/

Understanding Informed Consent

Informed consent means deciding whether to participate after receiving information you can understand. You should have an opportunity to ask questions before agreeing.

Before you join a study, the research team should explain:

• The purpose of the research.
• Who is conducting and funding it.
• What you will be asked to do and how long it will take.
• Any reasonably foreseeable risks or discomforts.
• Any potential benefits, payments, or other participation arrangements.
• How your information will be collected, stored, and used.
• How to stop participating and what happens to information already collected.
• Who to contact with questions or concerns.

Participation does not guarantee a personal benefit. Research involving a program or intervention does not mean that its effectiveness has already been established.

Participation Is Voluntary

You can choose whether to participate. You can decline an invitation, ask for more information, or take time to consider your decision.

Agreeing to participate does not mean you must continue until the end. You should not feel pressured to join or remain in a study.

If you are invited through an organization or practitioner you already receive services from, the consent information should explain how your decision affects—or does not affect—those services.

Taking a Break or Withdrawing

If you want to pause or stop, tell the research team using the contact details in your study information. The consent form should explain whether you can skip questions, take breaks, or stop individual activities.

Stopping participation and removing previously collected information are different requests. Depending on the study, researchers may be able to remove your information only before a specified date or before it has been anonymized or combined with other results.

Check your consent form for the study’s withdrawal process. You can also ask the research team what information can still be removed and whether withdrawal affects any payment or access arrangements.

Studies Involving Sounds or Other Potential Triggers

Some misophonia studies involve listening to sounds, watching videos, or discussing experiences that may be uncomfortable.

If a study includes potentially triggering material, its recruitment information should explain this before you sign up. Before the activity begins, you should receive information about the types of material, how it will be presented, its duration, and your options for pausing or stopping.

You can ask about sound levels, headphones, visual content, or other aspects of the activity before deciding whether to participate. You do not need to listen to examples simply to ask for information.

If an activity causes distress, let the researcher know. The study information should explain what support or next steps are available.

Privacy and Confidentiality

The consent form should explain what information researchers collect, who can access it, where it is stored, how long it is kept, and whether it may be shared with other researchers.

These terms have different meanings:

Anonymous information is collected without information that identifies you. Some anonymous surveys cannot remove an individual response after submission because the researchers cannot tell which response belongs to you.

De-identified information has identifying details removed or replaced with a code. Depending on the study, a separate record may still connect that code to your identity.

Confidential information is accessible only under specified conditions. Confidentiality does not necessarily mean that no identifying information is collected.

A study should explain any limits to confidentiality. If interviews, recordings, or direct quotations are involved, check how these will be used and whether identifying details will be removed.

Research Ethics Review

An Institutional Review Board, or IRB, reviews research involving human participants. Its role includes examining the consent process, foreseeable risks, privacy arrangements, and protections for participants.

Ethics approval does not guarantee that a study is risk-free or that a program being studied is effective. It also does not replace your right to ask questions or decide whether participation is suitable for you.

For studies reviewed by the International Misophonia Foundation IRB, information about the board is available on the IMF IRB page. External studies listed on this website may have been reviewed by another institution; consult the individual study information.

Questions, Concerns, or Complaints

For questions about appointments, questionnaires, study activities, or withdrawal, contact the research team using the details in your information sheet or consent form.

If your concern relates to your rights as a participant, the consent process, pressure to participate, privacy, or how you have been treated, you can contact the reviewing ethics board directly. You do not have to raise a concern with the researcher first.

For studies reviewed by the International Misophonia Foundation IRB, contact:

Harrison Porter, IRB Chair
Harrison@misophoniafoundation.com

Include the study title and a brief explanation of your concern. You do not need to include detailed medical information in your first email.

For an external study, use the ethics contact provided in that study’s consent materials.

Receiving Study Results

You can ask whether a summary of the findings will be available and how to receive it. Some studies provide an overall results summary but do not provide individual scores or personal interpretations.

Research can take time to complete, analyze, and publish. Your study information or research team can explain the expected timeline and where updates will appear.