In our interviews with family support groups, we’ve learned that preparation means different things for different conditions and different families. We’re presenting some of our early findings this week at the American Society for Bioethics and Humanities 2021 conference.
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!
It’s been a while since we’ve posted an update, and during that time we were waiting with bated breath to hear about our grant application. Well, we’re thrilled to announce that we have received funding from the National Institutes of Health to conduct our study! We have four years of funding with which we’ll talk … More The PREPARE Study is a go!
A new post on The DNA Exchange observes that, while a genetic diagnosis may seem like the end of a journey for a clinician, it’s really the beginning of a lifelong journey for individuals and families. And, even more importantly, that journey isn’t entirely defined by clinical diagnoses or encounters. … More Diagnosis begins a journey
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
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!
The guiding question of the PREPARE study is: What helps parents prepare for the birth of a child with a genetic condition? And the answer is: we just don’t know for sure. Surprisingly, given how often we talk about prenatal testing as giving parents information that will help them prepare, there are simply no studies … More Does prenatal testing help parents prepare?
I’m happy to report that, after much coffee, our grant proposal to fund the PREPARE study has been submitted to the National Institutes of Health, and is now assigned to a review committee. It will be months before we have any additional news about scoring and funding decisions, but this is a big step. Meanwhile, … More Grant proposal in!
Parents and families of children with Down syndrome have a wealth of education and support to draw on. National groups and initiatives have made many resources available for free, either online or by phone or mail. … More Down syndrome support
Many women choose to have testing during pregnancy to learn whether their future child is likely to have a genetic condition. Different tests can give women different levels of certainty about what to expect from their pregnancy and birth, but no test can predict the future 100%. … More Prenatal genetic testing