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BOSTON -- The growth of prenatal screening in Europe has reduced the number of babies being born per year with Down syndrome (DS) by an average of 54%, according to a new study published in the
European Journal of Human Genetics by researchers from Massachusetts General Hospital (MGH) and international Down syndrome organizations. In research published in 2016, the same team found that 33% fewer babies with DS per year were born in the United States as a result of pregnancy terminations.
The researchers spent three years collecting data from multiple registries and databases in every country in Europe to estimate the number of babies being born with DS and the overall number of people with DS in the population. "People with DS were being counted sporadically, inconsistently, or not at all, depending on the country," says Brian G. Skotko, MD, MPP, a medical geneticist at MGH and senior author. "But without an accurate estimate, it's impossible for policymakers and advocacy organizations to determine how many resources and support services are needed for its Down syndrome population." The researchers applied statistical modeling to create estimates in countries where there were gaps in data. "These data are as close to accurate as possible," says Skotko. The data are laid out in both the study and an associated fact sheet.