We’ve published our first results!

We’re thrilled that the first results from the PREPARE study have now been published in the Journal of Community Genetics! This article draws on our interviews with family support groups, and reports on their priorities when communicating with families who’ve recently received a genetic diagnosis, their limitations (especially related to limited funding), and ultimately their … More We’ve published our first results!

We’re still here!

It’s been nearly a year since our last blog post, and what a year! At this time last year, hospitals and clinics were just beginning to get a handle on the overwhelming challenges of the COVID-19 pandemic. We didn’t attempt to recruit families during those early months. One thing we did instead: adjust our study … More We’re still here!

Grant resubmission complete

We’re happy to report that we’ve resubmitted our application for R01 grant funding from the National Institutes of Health. This project is based at Case Western Reserve University and we are collaborating with University Hospitals of Cleveland, the Mayo Clinic, the Albert Einstein College of Medicine/Montefiore Medical Center, and the University of North Carolina-Chapel Hill–in … More Grant resubmission complete

Time to revise!

Our PREPARE study grant application received helpful feedback from its last submission, and we are preparing a revised submission for July. The previous application focused specifically on the case of Down syndrome. This one will look more broadly at a variety of prenatally diagnosable genetic conditions, while still taking a more in-depth look at families … More Time to revise!