National Center for Prenatal and Postnatal Down Syndrome Resources (KY UCEDD) Announces New and Updated Materials
January 2, 2014
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The University of Kentucky's Human Development Institute launched new and revised materials for medical professionals and expectant parents learning about a prenatal diagnosis of Down syndrome. Balanced, up-to-date, and scientifically accurate resources are especially critical with the advent of non-invasive prenatal screening tests for Down syndrome and other genetic conditions.
Our Lettercase "Understanding a Down Syndrome Diagnosis" booklet is the only resource about Down syndrome for expectant parents to have been reviewed and to carry the imprimatur of national advocacy, genetics, and medical organizations who participated in the Down Syndrome Consensus Group. This booklet describes in English and Spanish common medical issues in the first year and a developmental milestones chart while also covering available educational and health resources, as well as research on family outcomes. One of the signature components of the booklet has always been the photography which captures authentic images of people with Down syndrome in the context of their daily lives - such as engaging in occupational therapy, participating in ballet class, riding bikes, and working at the hospital. However, in this new printing, we added even more diverse photography to include images with a wider range of cultural, medical, and age diversity. This photography gives expectant parents the opportunity to view what life with Down syndrome is like for different individuals. These books are available free as an ebook at Lettercase.org and in the iBooks store for the iPhone and iPad. Medical professionals can also request a free printed copy at Lettercase.org, and bulk orders of booklets are available for purchase to contribute funding to the ongoing sustainability of the program.
In addition, we also revised our "Delivering a Down Syndrome Diagnosis" bi-fold for obstetric and genetic medical providers. This bi-fold summarizes the best practices cited in research for delivering a prenatal diagnosis of Down syndrome. The new version specifically covers the new non-invasive prenatal screening tests, so that medical providers have the latest information about both the benefits and limitations of those tests. It is particularly critical for medical providers to understand that the new screening tests are not diagnostic tests. These bi-folds are available for purchase at Lettercase.org.
Finally, we have produced a wholly new pamphlet on "Understanding Prenatal Screening and Testing for Chromosome Conditions" in both English and Spanish to help pregnant women and their families understand the benefits and limitations of the available testing options (including the new screening tests), reasons why they might or might not want to test, the availability of genetic counseling and general information about the different genetic conditions, and where to find reliable information about conditions ranging from Trisomy 13 to Down syndrome to Klinefelter Syndrome. The pamphlet was created with funding from the U.S. Administration on Intellectual and Developmental Disabilities, and has been endorsed by the National Society of Genetic Counselors (NSGC). This pamphlet can be accessed online at www.lettercase.org/prenataltesting and can be purchased in the Lettercase bookstore.
