MetabERN has published a new article in the Lancet Regional Health journal on newborn screening programmes in Europe. The article presents elements identified by the Screen4Rare initiative, in collaboration with the ERNs, in order to achieve effective operation of newborn screening programmes in Europe. The elements include better organisation of information, care, support, monitoring, and management of newborn screening programmes in order to improve the outcome for patients and their families. The article also highlights that Screen4Rare has issued a Call to Action to recruit support from Health Policy makers and European members of parliament to develop agreed case definitions and confirmatory testing for European screening and support the development of interoperable disease registries for screened conditions within Europe.
(source: OrphaNews 12 April 2022)