Welcome to our Research Study

In this survey, we will be asking you some questions to better understand your preferences around having the COVID-19 vaccine.

Before we start, please read the consent form below.


TITLE: COVID-19 vaccination in patients with autoimmune disease: A Discrete Choice Experiment
SPONSOR: University of Calgary
FUNDER: Canadian Institutes of Health Research (CIHR)
INVESTIGATORS: Principal investigator: Dr. Glen Hazlewood, PhD, MD, FRCPC

INTRODUCTION
Dr. Glen Hazlewood, and associates from the Cumming School of Medicine at the University of Calgary are conducting a research study. This form is only part of the process of informed consent. It should give you the basic idea of what the research is about and what your participation will involve. Please take the time to read it carefully. Your participation in this research study is voluntary.

WHY IS THIS STUDY BEING DONE?
The purpose of this research is to better understand patients' preferences and decision-making around having a COVID-19 vaccine. We have created a discrete choice experiment (DCE), which is essentially an online survey, with questions to answer and choices to make about having a COVID-19 vaccine.

HOW MANY PEOPLE WILL TAKE PART IN THIS STUDY?
Canada wide, about 1,000 people will take part in this study through the University of Calgary.

WHAT WOULD I HAVE TO DO?
If you volunteer to participate in this study, you will be asked to:

- Access and complete the survey (mainly by selecting from multiple choice answers).
- Review a selection of different COVID-19 vaccine options, each with potential risks and benefits highlighted, and select whether or not you would choose the one shown.
- Provide your age, gender, weight, ethnicity, education, province you live in (including first 3 digits of your postcode), whether you smoke, your disease type, medications you are currently taking, and past diseases you may have had. Most of these answers can be selected from a list, with a ‘Prefer not to say’ option.

Your name will not be requested and it will not be collected via this consent form. By continuing to the survey below, your anonymous consent will be implied.
All responses are collected online and will be kept confidential.

- At the end of the survey, you will be asked if you would like to give your consent to be contacted about future studies that our team may be conducting. If you do, you will be asked to provide your email address, which will be stored securely. You can opt out of this consent at any time by contacting the research team or replying to any future emails you receive. Importantly, there is no obligation to provide this consent to contact, or your email address, and they are not necessary for participation in this single study.

HOW LONG WILL I BE IN THIS STUDY?
Participation will take a total of about 15 minutes to complete.

ARE THERE ANY POTENTIAL RISKS OR DISCOMFORTS THAT I CAN EXPECT FROM THIS STUDY?
The risks are felt to be minimal. There is a chance you could feel uncomfortable with choosing between different hypothetical COVID-19 vaccine options or providing the anonymous background information requested. Please note that it is possible to opt out of answering some of these questions and still participate.

ARE THERE ANY POTENTIAL BENEFITS IF I PARTICIPATE?
There will be no direct benefit to you from participating in this study. However, this study may help the researchers learn more about patient preferences around having the COVID-19 vaccine.

WHAT OTHER CHOICES DO I HAVE IF I CHOOSE NOT TO PARTICIPATE?
You are free to choose not to participate in the study. If you decide not to take part in this study, there will be no penalty to you.

CAN I STOP BEING IN THE STUDY?
Yes. You can decide to stop at any time, even after you have started completing the survey. However, once your anonymous answers have been submitted, they cannot be withdrawn.

WITHDRAWAL OF STUDY DATA
It will not be possible to withdraw your data after you have submitted your survey answers, as we will not be able to identify which set of answers belong to you.

WILL I BE PAID FOR PARTICIPATING, OR DO I HAVE TO PAY FOR ANYTHING?
You will not be paid for your participation in this research study.

WILL INFORMATION ABOUT ME AND MY PARTICIPATION BE KEPT CONFIDENTIAL?
The researchers will do their best to make sure that your private information is kept confidential. Information about you will be handled as confidentially as possible, but there is always the potential for an unintended breach of privacy. The research team will handle data according the Data Management Plan as outlined below:

- All survey responses will be kept in a secured location. All data will be anonymous and only available to authorized study personnel and the University of Calgary Conjoint Research Ethics Board. Your email information will only be collected if you consent to be contacted for future research, and this will also be securely stored.
- The online survey company, Sawtooth Software, is hosted by a web-survey company located in the USA and as such is subject to U.S. laws. In particular, the US Patriot Act which allows authorities access to the records of internet service providers. This survey itself does not ask for personal identifiers or any information that may be used to identify you. Sawtooth Software servers record incoming IP addresses of the computer that you use to access the survey but no connection is made between your data and your computer’s IP address. If you choose to participate in the survey, you understand that your responses to the survey questions will be stored and accessed in the USA. The security and privacy policy for Sawtooth Software can be found at the following link: https://sawtoothsoftware.com/privacy-policy

HOW LONG WILL INFORMATION FROM THE STUDY BE KEPT?
The researchers intend to keep the research data indefinitely for future research.

WHOM MAY I CONTACT IF I HAVE QUESTIONS ABOUT THIS STUDY?
The research team:
You may contact Dr. Hazlewood’s research assistant, Pauline Hull, at (403) 210 9338, with any questions or concerns about the research or your participation in this study.
Conjoint Health Research Ethics Board (CHREB):
If you have any questions concerning your rights as a possible participant in this research, please contact the Chair, Conjoint Health Research Ethics Board, University of Calgary at 403-220-7990.

HOW CAN I FIND OUT ABOUT THE STUDY RESULTS?
The study results are available on request. Please see researcher’s contact details above.

WHAT ARE MY RIGHTS IF I TAKE PART IN THIS STUDY?
Taking part in this study is your choice. You can choose whether or not you want to participate. Whatever decision you make, there will be no penalty to you.
- You have a right to have all of your questions answered before deciding whether to take part.
- Your decision will not affect the standard medical care you receive.
- If you decide to take part, you may leave the study at any time (though any survey data already submitted will be kept).

HOW DO I INDICATE MY AGREEMENT TO PARTICIPATE?
Continuing to the survey indicates that you have understood to your satisfaction the information regarding your participation in this research project, and agree to take part in the study. In no way does this waive your legal rights nor release the investigators or involved institutions from their legal and professional responsibilities.

THANK YOU!
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