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
It may surprise you to learn that even for Down syndrome, the condition most commonly tested for during pregnancy, there are no standard clinical recommendations for how to “prepare” for a birth and a child with the condition. … More Preparing for birth