Lexington, KY, April 12, 2013 --(PR.com
)-- On Thursday, April 4, 2013, the American College of Medical Genetics and Genomics (ACMG) released their policy statement on non-invasive prenatal screening (NIPS) (http://www.acmg.net/docs/nips-GiM_galley_text_130301.pdf). The policy statement indicates that patients should be provided accurate, up-to-date, and balanced information about Down syndrome upon receiving a prenatal diagnosis. The statement specifically includes Lettercase, Brighter Tomorrows, and the American Academy of Pediatrics “Health-Care Supervision for Children with Down Syndrome” as recommended patient resources.
Stephanie Meredith, MA, Medical Outreach/Lettercase Program Director at the University of Kentucky's Human Development Institute says, "Learning about a prenatal diagnosis of Down syndrome can be overwhelming and isolating. Patients receiving that news also need information and support right away, and they desperately want answers to questions about what life is like for people living with prenatally diagnosed conditions. So, we appreciate that ACMG has included the importance of patient resources in their guidelines, and we appreciate the guidance that ACMG has provided to us through the years."
Brighter Tomorrows (www.brightertomorrows.org) is a website for medical professionals and new and expectant parents learning about Down syndrome and was funded by a federal grant, with effectiveness studies in peer-reviewed journals. Lettercase (www.lettercase.org) includes the booklet, "Understanding a Down Syndrome Diagnosis," available in English and Spanish, which was prepared with assistance from representatives of ACMG, the American Congress of Obstetricians and Gynecologists, the National Society of Genetic Counselors, the National Down Syndrome Society, and the National Down Syndrome Congress. Physicians and scholars from around the world have also identified this booklet as the most balanced material about Down syndrome for expectant parents.
According to Dr. Brian Skotko, Co-Director of the Massachusetts General Hospital Down Syndrome Program, "This policy statement establishes firmly the importance of the Lettercase materials during post-test counseling. Created with landmark collaboration between the medical community and advocacy organizations, these materials help ensure that expectant women and their partners can make informed decisions."
The Lettercase booklet and Brighter Tomorrows are both available at no cost and can be downloaded as resources from the National Center for Prenatal and Postnatal Down Syndrome Resources at the University of Kentucky's Human Development Institute, which also includes the Down Syndrome Pregnancy website and book “Diagnosis to Delivery: A Pregnant Mother's Guide to Down Syndrome” (also available as a free download at www.downsyndromepregnancy.org). Medical providers can also request a free print copy of “Understanding a Down Syndrome Diagnosis."