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Allergy & Asthma Network invites you to take part in a University of Cincinnati research study to understand adults’ perceptions of asthma care for children with physical or intellectual disabilities. We encourage you to take this survey if you are a parent or caregiver of a child with these special needs. We also encourage you to take this survey if you are an educator, health professional, or if you are otherwise familiar with children who have asthma and these special needs.

The study involves a survey that takes about 5 minutes to complete and is confidential and anonymous. More information is in the Study Q&A below.

Information Form

Title of Study: Perceptions of Asthma for Children with Special Needs

Investigator: Laura Nabors email: Laura.Nabors@uc.edu or naborsla@ucmail.uc.edu

INTRODUCTION

You are being asked to take part in a research study. Please read this paper carefully and ask questions about anything that you do not understand.

WHO IS DOING THIS RESEARCH STUDY?

The person in charge of this research study is Laura Nabors of the University of Cincinnati (UC) School of Human Services, College of Education, Criminal Justice and Human Services.

There may be other people on the research team helping at different times during the study.

WHAT IS THE PURPOSE OF THIS RESEARCH STUDY?

The purpose of this research study is to understand people’s perceptions of how children with special needs or developmental disabilities take care of their asthma and professionals’ knowledge about caring for youth with asthma and special needs.

WHO WILL BE IN THIS RESEARCH STUDY?

About 500-900 people will take part in this study. You may volunteer to be in this study if you can read English, are 18 years of age or older, and are able to complete the survey online.

WHAT WILL YOU BE ASKED TO DO IN THIS RESEARCH STUDY AND HOW LONG WILL IT TAKE?

You will be asked to complete a survey. It will take about 5 minutes to finish. The survey is online in Redcap and you can volunteer to complete it.

ARE THERE ANY RISKS TO BEING IN THIS RESEARCH STUDY?

It is expected that you will not have risk or only minimal risk by volunteering to complete the survey.
Some questions may make you uncomfortable. You can refuse to answer any questions that you don’t want to answer.

ARE THERE ANY BENEFITS FROM BEING IN THIS RESEARCH STUDY?

You will probably not get any benefit from taking part in this study. But, being in this study may help researchers and health professionals understand about helping children with asthma.

WHAT WILL YOU GET BECAUSE OF BEING IN THIS RESEARCH STUDY?

You will not be paid or given anything to take part in this study.

DO YOU HAVE CHOICES ABOUT TAKING PART IN THIS RESEARCH STUDY?

If you do not want to take part in this research study you may not participate and you do this by not doing the survey.

HOW WILL YOUR RESEARCH INFORMATION BE KEPT CONFIDENTIAL?

Information about you will be kept private by using a study ID number instead of the participant’s name on the research forms. No names or personally identifying information will be on the survey. Only the research team will see the survey. Research data will be kept on a password protected computer as well. Information will be kept for three years and then the files (any computerized records) will be deleted from the password protected computer.

Agents of the University of Cincinnati may inspect study records for audit or quality assurance purposes. The researcher cannot promise that information sent by the internet or email will be private.

Information that could identify you will be removed from the study data. After removal, the study data could be used for future research studies. The study data could also be given to another researcher for future research studies. This may be done without getting additional permission from you.

WHAT ARE YOUR LEGAL RIGHTS IN THIS RESEARCH STUDY?

Nothing in this consent form waives any legal rights you may have. This consent form also does not release the investigator, the institution, or its agents from liability for negligence.

WHAT IF YOU HAVE QUESTIONS ABOUT THIS RESEARCH STUDY?

If you have any questions or concerns about this research study, you should contact Laura Nabors at Laura.Nabors@uc.edu or telephone 513-556-5537.

The UC Institutional Review Board reviews all research projects that involve human participants to be sure the rights and welfare of participants are protected.

If you have questions about your rights as a participant, complaints and/or suggestions about the study, you may contact the UC IRB at (513) 558-5259. Or, you may call the UC Research Compliance Hotline at (800) 889-1547, or write to the IRB, 300 University Hall, ML 0567, 51 Goodman Drive, Cincinnati, OH 45221-0567, or email the IRB office at irb@ucmail.uc.edu.

DO YOU HAVE TO TAKE PART IN THIS RESEARCH STUDY?

No one has to be in this research study. Refusing to take part will NOT cause any penalty or loss of benefits that you would otherwise have.

You may skip any questions that you don’t want to answer.

BY TURNING IN YOUR COMPLETED SURVEY (or BY TAKING PART IN THESE ACTIVITIES) YOU INDICATE YOUR CONSENT FOR YOUR ANSWERS TO BE USED IN THIS RESEARCH STUDY.

PLEASE KEEP THIS INFORMATION SHEET FOR YOUR REFERENCE