Metabern & ISNS meeting – Moving towards NBS as a system: Setting out the roadmap

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The meeting “Moving towards NBS as a system: Setting out the roadmap” organised by the International Society for Newborn Screening (ISNS), the multistakeholder initiative Screen4Rare and the European Reference Network for Hereditary Metabolic Disorders MetabERN was held online last Thursday 11 November 2021. This was the third meeting to focus on newborn screening following the accompanying event of the Slovenian Presidency “Achieving Equity and Innovation for Newborn Screening and in Familial Hypercholesterolemia Paeditric Screening across Europe” and the launch meeting of the ERN Expert Platform for Newborn Screening.

The meeting was held during the ISNS symposium days and saw the active participation of experts and patient representatives from all over Europe and the U.K. During the meeting participants had the opportunity to engage in three interactive workshops focused on the workstreams defined during the previous meetings; one concerning the registries and their role in newborn screening, one on the importance of clear case definitions and one on concrete ideas on how to set up the roadmap to move towards newborn screening as a system. The comments and contributions of the participants captured during the meeting will help to set out a first draft of a roadmap to a more harmonised and equitable approach for a newborn screening system.

A special thanks on behalf of James Bonham (President of ISNS) and Maurizio Scarpa (Coordinator of MetabERN) goes to Mirjam van der Burg (Leiden University Medical Centre), Peter Schielen (ISNS)  and Stefan Koelker (Vice-coordinator of MetabERN and Coordinator of the U-IMD Registry) for the insightful workshops, to Antoni Montserrat (EURORDIS) and Alessandra Ferlini (Screen4Care) for their valuable contributions in the panel, to Victoria Hedley (Newcastle University) for her excellent moderatorship and to Johan Prevot (IPOPI) for his spot-on wrap-up and conclusions.