Respirator Fit Study FAQ – Privacy, Consent, Rights and Withdrawals

How is my privacy protected?

There are strict rules researchers must follow to protect your privacy. To protect your privacy we will:

Assign you a unique study number that does not contain personal information about you. We will use this number on all our forms and when handling your data to limit access to your personal data among research staff.
All information that contains your identity will remain only with the study Principal Investigator and/or designate.
A master list which contains your name and unique study number will be kept separate from all other research materials.
All your information/data will be stored on a secure government network, and hard copies will be kept in locked cabinets in secured buildings with restricted access.
All publications and reports from this study will also only present grouped results and will not identify individuals or results that could be used to identify a particular study participant.

Do I have to tell my service I am participating, or will they know what my results are?

NO. You do not have to tell your service of your participation and we will not release who participates in the study. The research team will not share your individual results with any services. All reports from this study will present grouped/aggregate results and will not identify individuals. You are free however, to share your participation/results with your service if you want to.

Why do I have to sign an informed consent form?

An informed consent form is used to provide participants with information about the study including the risks and benefits of participating in the study before they volunteer. You sign the consent form to ensure that you have received the information and understand your rights as a participant of this study and possible risks that the study may involve. If you decide to participate, the informed consent form will be given to you at least 24 hours before your appointment at the Gage Building or a pre-selected testing site so you can have time to review the form and ask questions.

Can I email the consent form before I come for testing?

No, you cannot email the signed consent form. All informed consent forms must be signed at the study site in front of a research staff member. This is a requirement from research ethics to ensure you are aware of your rights and it allows the research staff the opportunity to ask you if you have any questions/concerns before signing.

What happens if I want to quit the study?

Your participation is voluntary, and you can withdraw from the study at any time with no consequences. To withdraw, tell a research team member that you no longer wish to participate. If you decide to withdraw, you can request to have your data destroyed and the research team will do so where possible. However, it may not be possible to withdraw your data if it is no longer identifiable, if it has been merged with other data, or if de-identified data has been made publicly available (i.e., released in a presentation, report, or scientific article).

Can my results be destroyed if I quit the study?

You can request to have your data destroyed and the research team will do so where possible. However, it may not be possible to withdraw your data if it is no longer identifiable, if it has been merged with other data, or if de-identified data has been made publicly available (i.e., released in a presentation, report, or scientific article).