Consent form |
Online Consent to Participate in Research
Title of Research Study: Understanding the Psychosocial Coping Strategies of Individuals and Families Affected by Food Allergy
IRB Study Number: STU00210953
Principal Investigator:
Ruchi Gupta, MD, MPH
Professor of Pediatrics and Medicine, Northwestern University 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 & Asthma Research (CFAAR) at Northwestern University Feinberg School of Medicine
Key Information about this research study:
The purpose of this study is to better understand how individuals and caregivers cope with their feelings related to living with food allergies. This study will explore the thoughts, emotions, and coping strategies patients and caregivers have as they manage food allergies. It will also identify the coping interventions patients and caregivers are interested in learning to better manage their feelings and thoughts related to living with food allergies.
You will be asked to complete a survey that will take you about 15 minutes.
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.
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, unless you opt into future communication from the research team. Information provided in this survey can only be kept as secure as any other online communication.
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, unless you opt in to being contacted in the future about interventions our research team will test. In this case, we will ask for your email for future communications. Please do not include your name or any other information that could be used to identify you in the survey responses.
We expect that you will be in this research study for 15 minutes unless you indicate you are interested in participating in the following phases of the study.
There are no direct benefits to you for taking this survey. The information learned from this survey will help the researchers learn more about coping mechanisms and practices families an people affected by food allergy. The results may influence clinical practice, recommendations, and technologies offered to families and people with food allergies.
You are being asked to take part in this study because you are either a person living with a food allergy, or the parent of a child living with a food allergy and receiving feedback from this population is one of the main goals of this research. With the information collected from this survey, we hope to inform future clinical care so that patients living with food allergy are provided with methods of coping that meet their psycho-social concerns.
How many people will be in this study?
We expect about 2,000 people will participate in this research study.
What should I know about 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.
If you say that "Yes, you want to be in this research," here is what you will do.
During the study, you will be asked to complete an online survey with questions about the coping mechanisms you use to manage your food allergy, your past reactions, and social life while living with food allergies. You will also be asked what you would be the most willing to try to cope with any food allergy-related emotions
What happens if I do not want to be in this research or if I say "Yes", but I change my mind later?
Participation in this study is optional and voluntary. You can stop taking part in this study at any time. Your decision will not affect your regular care. 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 decide not to participate in this research or you can start and then decide to leave the research at any time and it will not be held against you. To do so, simply exit the survey. Any data already collected will not be saved.
What happens to the information collected for the research?
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 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 the results of your survey, any possible identifiers will be deleted. All information will be kept on a password-protected computer only accessible by the research team. The results of the research study may be published, but your name will not be used.
Data Sharing
De-identified data from this study may be shared with the research community at large to advance science and health. We will remove or code any personal information that could identify you before files are shared with other researchers to ensure that, by current scientific standards and known methods, no one will be able to identify you from the information we share. Despite these measures, we cannot guarantee the anonymity of your personal data.
Who can I talk to?
If you have or your child has any questions about the research, you should contact the principal investigator, Ruchi Gupta, MD, MPH, (312)-523-3553, or you can reach out to the Research Study Coordinator, Madeleine Kanaley, at (312)-503-5339.
This research has been reviewed and approved by an Institutional Review Board ("IRB"). You may talk to them at (312) 503-9338 or 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.
Consent
If you want a copy of this consent for your records, you can print it from the screen.
Please hit the submit button below to voluntary complete the survey. Thank you!