Title of Research Study: Understanding Food Allergy Awareness and Needs Among College Students

Principal Investigator: Principal Investigator: Ruchi Gupta, MD, MPH, Professor of Pediatrics and Medicine, Northwestern Feinberg School of Medicine; Clinical Attending, Ann & Robert H. Lurie Children’s Hospital of Chicago; Director, Center for Food Allergy & Asthma Research (CFAAR)

Supported By: This research is supported by the Center for Food Allergy and Asthma Research (CFAAR) at Northwestern University Feinberg School of Medicine

Key Information about this research study:

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

The goal of this research is to better understand the needs of college students with food allergy (FA) and identify areas for improvement on college campuses. Questions will explore current awareness of food allergy on college campuses for those with and without food allergy, experiences in the dining hall and social situations, and ways to improve FA support on campus. The information collected from this survey will ultimately be used to address the identified deficiencies with the hope of improving quality of life and appropriate support for college students with food allergies.

You will be asked to complete an anonymous survey. If you do not have a food allergy, it should take you no more than 5 minutes to complete. If you have a food allergy, it should take you no more than 10-15 minutes to complete. This survey will be done online using the service, REDCap.

The information that you provide in the survey will not be linked to your computer, email address, or other electronic identifiers. Information provided in this survey can only be kept as secure as any other online communication.

The primary potential risk of participation is a breach of confidentiality, but we will make every effort to keep your information safe. Participation in this study is optional and voluntary. You do not have to take this survey if you do not want to. The answers that you provide in the survey may still be used if you stop the survey and do not finish. Any question you do not answer will not be collected.

You can skip questions that you do not want to answer or stop the survey at any time. The survey is anonymous, and no one will be able to link your answers back to you. Please do not include your name or any other information that could be used to identify you in the survey responses.

There are no direct benefits to you for taking this survey. The information learned from this survey will help identify areas of accommodation that need to be improved on college campuses for students with FA.

Why am I being asked to take part in this research study?

We are asking you to take part in this research study because you are a college student or recent college graduate. You do not need to have food allergies to participate in this study. Your answers will give researchers insight into the deficiencies in awareness and accommodations for students with food allergies on college campuses. We would really appreciate your help in our effort to help make universities safer and more accommodating for students with food allergies.

How many people will be in this study?

We expect about 500 people will be in this research study. We expect about 100 people will be enrolled in this research study through Northwestern, out of about 400 people in the study across all institutions that are participating.

What should I know about participating in a research study?

● 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 can ask all the questions you want before you decide.

● You can agree to take part and later change your mind.

● You do not have to answer any question you do not want to answer.

What happens if I say, “Yes, I want to be in this research”?

If you want to be in this research, we will ask you to complete a short survey about your knowledge of food allergies and your social life. There will be certain questions specific to college students with food allergies to assess their experiences navigating these allergies in the dining halls, in their social life. Your answers will remain anonymous, and you are free to skip any questions you do not feel comfortable answering. Your answers will be entered into our secure online survey system called REDCap. Once you have completed the survey, your participation in the research will conclude.

Will being in this study help me in any way?

We cannot promise any benefits to you or others from your taking part in this research. However, the information learned from this survey will help identify areas of accommodation that need to be improved on college campuses for students with FA.

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

We will not be collecting any identifiable information from you and your participation is voluntary. It will not negatively impact you if you decide to participate or not participate.

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

Participation in research is voluntary. You can decide to participate or not to participate. If you do not want to be in this study or withdraw from the study at any point, your decision will not affect your relationship with Northwestern University or your institution in any way.

You can leave the research at any time and it will not be held against you.

If you decide to withdraw from this study, the researchers will ask you if information already collected from you can be used.

How will the researchers protect my information?

Efforts will be made to limit the use and disclosure of your personal information, including research study to people who have a need to review this information. We will not be collecting any identifiable information from you, but we cannot promise complete secrecy. Organizations that may inspect and copy your information include the IRB and other representatives of this institution.

This survey is being hosted by REDCap and involves a secure connection. Terms of service, addressing confidentiality, may be viewed at https://confluence.nubic.northwestern.edu/display/RUCP/REDCap+Project+Owner+Support

Upon receiving results of your survey, any possible identifiers will be deleted. You will be identified only by a unique subject number. All information will be kept on a password protected computer only accessible by the Northwestern research team.The results of the research study may be published, but your name will not be used.

Who will have access to the information collected during this research study?

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

There are reasons why information about you may be used or seen by other people beyond the research team during or after this study. Examples include:

· University officials, government officials, study funders, auditors, and the Institutional Review Board may need access to the study information to make sure the study is done in a safe and appropriate manner.

We will not ask you about child abuse, but if you tell us about child abuse or neglect, we may be required or permitted by law or policy to report to authorities.

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

We will keep the information we collect about you during this research study for study recordkeeping.

The data from this study may be shared with the research community, with journals in which study results are published, and with databases and data repositories used for research. We will remove or code any personal information that could directly identify you before the study data are shared. Despite these measures, we cannot guarantee anonymity of your personal data.

The results of this study could be shared in articles and presentations, but will not include any information that identifies you unless you give permission for use of information that identifies you in articles and presentations.

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

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

Who can I talk to?

If you have questions, concerns, or complaints talk to the Principal Investigator, Ruchi Gupta, MD, MPH at 312-523-3553, or r-gupta@northwestern.edu.

This research has been reviewed and approved by an 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 would like to have a blank copy of the consent form emailed to you, please email madeleine.kanaley@northwestern.edu

If you wish to participate, please click the “Submit” button and you will be taken to the survey.

If you do not wish to participate in this study, please select select X in the corner of your browser and it will close the survey.

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