Screen4Care Co-Announces the Formation of the International Consortium on Newborn Sequencing (ICoNS)
Our project proudly joins the launch of the International Consortium on Newborn Sequencing (ICoNS), with the aim of aligning stakeholders and establishing guidelines based on empirical evidence for the effective and equitable implementation of newborn sequencing.
In collaboration with other global experts, Screen4Care is pleased to announce the official launch of the International Consortium on Newborn Sequencing (ICoNS), marked by the ratification of its 2023 consortium agreement. The primary objective of ICoNS is to inform clinical and public health research and the implementation of genomic screening in newborns through the harmonisation and aggregation of scientific evidence and resources. ICoNS members recognise the power of newborn sequencing as a vital tool in public healthcare, enabling the prediction of treatable and actionable diseases in infants and interventions before symptoms manifest.
Nicolas Encina, Executive Director of ICoNS, stated, "The robust and effective clinical implementation of newborn sequencing can only be achieved through a common understanding and coordination among critical stakeholders required to build the necessary infrastructure to support it at population levels." It is with this perspective that ICoNS seeks to include and represent diverse voices in the harmonisation of objectives and development. ICoNS was founded as a global alliance comprising scientists, government officials, industry leaders, healthcare providers, ethicists, and patient advocates who all share a vested interest in the long-term design, coordination, and implementation of newborn sequencing in public health.
As a co-founder of the ICoNS consortium, Screen4Care is dedicated to contributing unique knowledge and advancing newborn sequencing research on a global scale. Alessandra Ferlini, Screen4Care Scientific Coordinator and member of the ICoNS Executive Committee, and Nicolas Garnier, EFPIA Lead of Screen4Care, expressed their enthusiasm for the ICoNS initiative and their role in the Consortium: "Partnership is one of the core values of Screen4Care, as we believe that synergy is key in facilitating the shortening of the rare disease diagnosis process. At the heart of our project lies the integration of expertise, knowledge, and viewpoints, aimed at avoiding overlapping efforts and supporting data harmonisation. For these reasons, we are excited to be co-founders and represented in the Executive Committee of ICoNS and help advance genetic newborn screening more impactfully. Together, we can gain valuable time and give it back to the rare disease community."
For more information on the ICoNS consortium and activities, click here.