The National Down Syndrome Society is dedicated to ensuring that all new and expectant parents around the country receive accurate, up-to-date, and balanced information about Down syndrome when they first learn of the diagnosis. So many new and expectant parents around the country report that the way in which they received the news could certainly have been improved. Further, physicians often lack the training in how to deliver such a sensitive diagnosis.

All new and expectant parents should be receiving the same information in a sensitive manner. To this end, NDSS asked Dr. Brian Skotko, Dr. Priya Kishnani, and Dr. George Capone of its Clinical Advisory Board to assemble a research team of 29 experts around the country to review research from 1960 to present day so that the following questions could be answered: Who is the best person to communicate the news? When is the best time to share the news? Where should the news be delivered? What information should be offered? How should the diagnosis be communicated?

The evidence-based results have now been published in two landmark papers, printed in the medical journals, American Journal of Medical Genetics and Pediatrics.