One of our genetic counseling student colleagues at Wayne State University, Maryam Ijaz, and her program director, Angela Trepanier, performed an analysis of the data we collected from patients about their genetic counseling experiences, as a subset of the data we collected about prenatal Down syndrome diagnosis experiences, to see Read more…
Watch the video from our most recent medical outreach call about the results from our community conversations with Black and Hispanic parents of children with Down syndrome and their specific suggestions for how advocacy organizations can better meet their needs. You can also learn more about our Patient-Centered Outcomes Research Read more…
Our team at UK just published a study on the experiences of patients learning about a prenatal diagnosis of Down syndrome and the information provided to them when receiving prenatal screening results. We also examined how implicit and explicit bias impacted the information they received. The article “The impact of implicit Read more…
We are excited to share with you our new manuscript (“Recommendations to improve the patient experience and avoid bias when prenatal screening/testing”) in Disability and Health Journal. Our multidisciplinary team of advisors for the Center for Dignity in Healthcare for People with Disabilities worked for over two years on this article to give recommendations to Read more…