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Ten-year survival of children with trisomy 13 or trisomy 18: a multi-registry
European cohort study

Lay Summary

 Children born alive with chromosomal abnormalities such as trisomy 13 (also referred to as Patau syndrome) or trisomy 18 (Edwards syndrome) are known to have a very high risk of death during the first days and weeks of life. In this part of the EUROlinkCAT project, we investigated survival of these children during their first 10 years of life.

The records of children born between 1995 and 2014 from 13 European population-based congenital anomaly registries, that were all members of the EUROCAT network, were linked to their regions’ mortality records. Survival for a total of 252 children with trisomy 13 and 602 children with trisomy 18 was estimated at 1 week of age, 4 weeks of age and at 1, 5 and 10 years of age within each registry. As the number of children with these rare chromosomal anomalies was small in each individual registry, the survival estimates for each trisomy were combined to provide more reliable estimates for Europe.

We found that although many children with these severe conditions died during the first 28 days of life (over 60%) and over 80% did not survive to their first birthday, 16% of children with trisomy 13 and 10% of children with trisomy 18 survived to 5 years, and 11% of children with trisomy 13 and 8% of children with trisomy 18 survived to 10 years. Of the children with trisomy 13 or 18 who survived to 28 days of life, 32%  with trisomy 13 and 21% with trisomy 18 survived to 10 years.

This study provided reliable information on the survival of children born with trisomy 13 or trisomy 18, which is valuable for parents of these children and for the health practitioners caring for them.

Full paper