OHSU IRB # 3762; UW IRB# SE-2008-0749

Research Participant Information Sheet

University of Wisconsin-Madison
Ursinus College Academic Autistic Spectrum Partnership in Research and Education (AASPIRE)
Oregon Health & Science University
Syracuse University
Autistic Self-Advocacy Network

Title of the Study: Gateway Project

Principal Investigators:

Morton Ann Gernsbacher, PhD	+1 608-262-6989	MAGernsb@wisc.edu
Christina Nicolaidis, MD, MPH	+1 503-494-9602	nicolaid@ohsu.edu

Co-Investigators:

Jennifer Stevenson	+1 610-409-3189	jstevenson@ursinus.edu
Katherine McDonald, PhD	+1 315-443-5313	kemcdona@syr.edu

Sponsor: Vilas Research Trust, University of Wisconsin-Madison

What is the Purpose of this Study?

You are invited to participate in an online research project called the Gateway Project. This online research project is a collaboration between the University of Wisconsin-Madison, Ursinus College, and the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), which is itself a collaboration between Oregon Health & Science University, Syracuse University, and the Autistic Self-Advocacy Network. The Gateway Project will enroll approximately 6,000 adults.

The Gateway Project is recruiting participants on the autistic spectrum and participants with and without disabilities for a series of continuing online research studies on topics such as health care, well-being, and problem solving. The goals of the Gateway Project are to

1. collect the Gateway Survey data (which includes information such as your age, gender, disability, interests, habits, and social interactions)
2. use the Gateway Survey data to invite eligible participants to other online Gateway research studies; and
3. use the Gateway Survey data in continuing online Gateway research studies.

Joining the continuing Gateway Project involves reading this Information Sheet and deciding to participate registering for a Gateway account completing an online survey (the Gateway Survey)

What is Required to Participate in the Gateway Project?

You can participate in the Gateway Project if you are at least 18 years old and you have access to the Internet.

What Can I Expect as a Participant in the Gateway Project? If you decide you want to join the continuing project, You will click the circle at the end of this form that says "Yes, I want to be a part of the continuing Gateway Project." You will be asked to create a Gateway account by entering an email address and creating a password. Your email address is needed so that the Gateway investigators (who are listed on this Information Sheet) can contact you about future studies that are part of the continuing project. You will then receive an email message to the email address you used to create your Gateway account. Inside the email message will be a Internet link (a URL) that you will need to click on to verify your email address. After you have verified your email address, you can login to the Gateway Project to complete the first study, which is an online survey called the Gateway Survey. The Gateway Survey will begin, and you can begin answering the survey questions. When you have completed the Gateway Survey, you will see a Thank You page.

What will the Gateway Survey be about?

The Gateway Survey asks about (a) personal information, such as age, gender, disability, education, and employment status, (b) information about which hand you prefer to use when doing activities, such as writing with a pen or pencil, and (c) information about your interests, habits, and social interactions. The survey questions are mostly multiple choice, with a few places where you can write in an answer if it's not already listed.

How long will it take to complete the Gateway Survey?

It will probably take between 20 and 40 minutes to complete the Gateway survey. You may take as many breaks and as much time as you would like to complete the survey.

1. After you complete the Gateway Survey, you will be registered for the Gateway Project.
2. You will receive email notifications whenever the Gateway has a new research study that you might be able to participate in. If you want to learn more about the new research study, you will log in with your email address and password. Every time you receive one of these notifications, you will have the option to 'unsubscribe' (withdraw from participating in this ongoing project) so that you do not receive future notifications.
3. You may also receive email notifications if the Gateway investigators learn of a new study that they feel might be of benefit to you.

How Will My Privacy be Protected?

• The Gateway investigators will not record your Internet Protocol (IP) address.
• The Gateway investigators will use Secure Sockets Layer (SSL) encryption to make sure no one can see the information you are sending through the Internet while it is being sent.
• Any information you provide during your participation in the Gateway Project will always be stored on a password-protected computer. Only the Gateway research team will have access to this information. The Gateway research team includes the Principal Investigators and Co-Investigators listed on this Information Sheet, their research staff, and their graduate and undergraduate students. You can receive a full list of the Gateway research team by emailing info@thegatewayproject.org.
• At any time, you can ask the Gateway investigators to delete the information you provided during your participation in the Gateway Project by contacting info@thegatewayproject.org.
• For every study in the Gateway Project, a code number will be used to link the information you provide in that study to any information that can identify you, such as your email address. Only the Gateway investigators, as listed on this Information Sheet, will be able to link the code numbers to any information that can identify you, such as your email address.
• The Gateway investigators will not use any information that can identify you in publications, presentations, or reports. The Gateway investigators will only publish general information about groups of participants and will never publish individual information about specific participants.
• The Gateway investigators will keep the information you provide during your participation in the Gateway Project indefinitely or until they are asked to destroy it.

What are the Possible Risks of Participating in the Gateway Project?

• There is a small risk of loss of privacy, as described above.
• There is a small risk that you might get frustrated if you have computer or Internet problems.
• There is a small risk that you might get tired or find some of the items in that study difficult to answer.

What are the Possible Benefits of Participating in the Gateway Project?

• You will not benefit directly from participating in the Gateway Project.
• Your participation might benefit persons on the autistic spectrum or persons with disabilities in the future.
• You may feel satisfied from contributing to research.

Will it Cost Anything to Participate in the Gateway Project?

You do not have to pay anything to participate in the Gateway Project.

Will I Be Compensated for My Participation in the Gateway Project?

For some of the studies in the Gateway Project, you might be compensated directly for participating in that study. If you will be compensated directly for participating in a study, you will be told about the direct compensation prior to your starting the study.

For other studies, you can choose to be entered into a drawing for a gift certificate to Amazon.com. Depending on the length of the study, the amount of the gift certificate and the odds of winning the certificate will vary. However, if you withdraw from the study before completing the study, you will not be eligible to enter the drawing for a gift certificate.

For the first study, the Gateway Survey, you can choose to be entered into a drawing for a $25 gift certificate to Amazon.com. A random winner will be chosen after each group of 25 participants has completed the Gateway Survey, so your chances of winning this drawing will be 1 in 25.

If you are an undergraduate student at the University of Wisconsin-Madison, you may choose to receive 1 extra credit point in your introductory psychology class for participating in some of the studies in the Gateway Project, including the Gateway Survey. If you choose to receive extra credit, you may not enter into the drawing for a gift certificate.

What Are My Rights as a Research Participant in the Gateway Project?

Your participation in the Gateway Project is completely voluntary. You are not required to participate in the Gateway Project. If you do decide to participate in the Gateway Project, and you later change your mind, you may quit at any time.

If you decide not to participate in the Gateway Project, your decision will have no effect on any services or treatment you are currently receiving, and your decision will not affect your current or future relationship with the University of Wisconsin-Madison, Ursinus College, AASPIRE, Oregon Health & Science University, Syracuse University, or the Autistic Self-Advocacy Network. If you decide to withdraw from the Gateway Project at any time, your decision will have no effect on any services or treatment you are currently receiving, and your decision will not affect your current or future relationship with the University of Wisconsin-Madison, Ursinus College, AASPIRE, Oregon Health & Science University, Syracuse University, or the Autistic Self-Advocacy Network.

Who Do I Contact If I Have Questions About the Gateway Project or About My Rights as a Research Participant?

For more information about the Gateway Project, you may email the Gateway Project at info@thegatewayproject.org or contact one of the Principal Investigators directly.

For more information about your rights as a participant in a research study (for example, what is okay for someone to ask you to do in a research study or how to report that you feel you have not been treated fairly in a research study) or if you are not satisfied with the response of the Principal Investigators, contact the University of Wisconsin-Madison Education Research and Social & Behavioral Science IRB Office (+1 608-263-2320 or email lmlarson@ls.admin.wisc.edu), Ursinus College IRB Office (+ 1 610-409-3734 or email irbadmin@ursinus.edu), or contact the Oregon Health & Science University Research Integrity Office (+1 503-494-7887 or email oioeduc@ohsu.edu).

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You may download or print a copy of this form for your records.

If you have read this document, understood it, and decided what you want to do, please click the circle next to your decision. By clicking "Yes, I want to be a part of the continuing Gateway Project," you indicate that you have read this Information Sheet, that you have had an opportunity to ask questions about your participation in this research, and that you voluntarily consent to participate.

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