The PREPARE Study

The PREPARE Study has closed enrollment and we are now completing our analysis and publishing our results.

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 are a group of researchers from Case Western Reserve University, University Hospitals Cleveland, Mount Sinai Health System, UNC-Chapel Hill, and Genetic Support Foundation. 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 Aaron Goldenberg, PhD, and Megan Allyse, PhD, at Case Western Reserve University, Larisa Rippel, MS, at University Hospitals Cleveland, Neeta Vora, MD, at UNC-Chapel Hill, along with our collaborators Siobhan Dolan, MD, Brian Skotko, MD, and others.