The PREPARE Study

Did you recently find out genetic information about your pregnancy or your baby?

We are interested in hearing from you!

We are studying the ways that families may prepare for a child with a genetic condition. If you recently received  genetic information, during pregnancy or after your baby was born, you can help us understand what kinds of resources and support that families like you may need.

We’ll be interviewing women and couples who are referred to our study from University Hospitals Cleveland, UNC-Chapel Hill, Albert Einstein College of Medicine, and their affiliates. Our goal is to recruit up to 150 families and talk with them multiple times over the course of the study.

If you received some information about the PREPARE study and are interested in learning more, or you’d like to join, you can call us at:

216-368-0035

and we’ll walk you through the documents you received. If you want to join the study, we’ll explain how to do that.

Participation is completely voluntary. If you decide to participate and later change your mind, you can always withdraw. Your medical care won’t change in any way, whether you join this study or not.

If you join, you’ll participate in 2 or 3 confidential phone interviews. We’ll ask you about your experience with finding out genetic information about your baby, and get your opinions about what resources are helpful for parents like you.

Compensation is provided for each interview you participate in.

We’ll protect your information by using and disclosing it only as permitted by you and as directed by law.

Please note that we aren’t recruiting parents via social media, or from any other source outside of our clinical partners. This website is for information only; and you cannot join this study unless you have received care from University Hospitals, UNC-Chapel Hill, Albert Einstein, or our affiliates.

Who are we?

We are a group of researchers from Case Western Reserve University, University Hospitals Cleveland, Albert Einstein College of Medicine, UNC-Chapel Hill, and the Mayo Clinic. This study is funded by the National Institutes of Health, grant number R01HG009668. This study’s primary investigator is Marsha Michie, PhD, an Assistant Professor of Bioethics at Case Western Reserve University School of Medicine. Co-Investigators are Larisa Rippel, MS, at University Hospitals, Neeta Vora, MD, at UNC-Chapel Hill, Siobhan Dolan, MD, at Albert Einstein College of Medicine in New York, and Megan Allyse, PhD, at the Mayo Clinic.