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"Newborn screening for sickle cell disease in Europe: recommendations from a Pan‐European Consensus Conference" has just been published with the endorsement of ERN-EuroBloodNet

2018-10-18

Recommendations has been published at the British Journal of Hematology under the endorsement of the network and with the participation of a high number ERN-EuroBloodNet members representatives and experts

Sickle cell disorders (SCD) are rare hematologic genetic disorders that, in their severe forms, are associated with chronic, life-impairing and -threatening conditions with inherent serious health sequelae that can lead to disability or even death. Although SCD are traditionally endemic in African and Middle East countries, their frequency have increseased recently worldwide due to migration and mobility flows, becoming a growing global health problem and a challenge to be tackled by European healthcare systems. The early detection of the disease through Newborn screening (NBS) is a key factor to initiate preventive measures that allows improving the prognosis of the disease, and thus, leading to a reduction in childhood mortality rate due to SCD. However, existing differences among policies and methodologies for NBS accross countries may have consequences for the quality of care provided to SCD patients in Europe.

In an effort to appraise the current status of NBS for SCD and to develop consensus‐based statements on indications and methodology for NBS for SCD in Europe, a two‐day Pan‐European consensus conference was held in Berlin in April 2017 with the participation of more than 50 SCD experts from 13 European countries. The "Newborn screening for sickle cell disease in Europe: recommendations from a Pan‐European Consensus Conference" has just been published at the British Journal of Hematology as a result of the consensous reached at the conference and aiming to contribute to the harmonization of the development of new NBS programmes in Europe an to review the already existing ones. 

The "Newborn screening for sickle cell disease in Europe: recommendations from a Pan‐European Consensus Conference" has been produced with the endorsement of ERN-EuroBloodNet, becoming the first recommendation endorsed by the network and counting with the participation of a high number of ERN-EuroBloodNet experts and members representatives, as Stephan Lobitz, Paul TelferMarianne de MontalembertClaudia Frömmel, Béatrice Gulbis, Baba InusaMarina KleanthousCorrina McMahon, Laura Sainati and Raffaella Colombatti. Congratulations to all!