Newborn screening for sickle cell disease in Europe: recommendations from a Pan-European Consensus Conference.
Stephan LobitzPaul TelferElena CelaBichr AllafMichael AngastiniotisCarolina Backman JohanssonCatherine BadensCeleste BentoMarelle J BouvaDuran CanatanMatthew CharltonCathy CoppingerYvonne DanielMarianne de MontalembertPatrick DucoroyElena DulinRalph FingerhutClaudia FrömmelMarina García-MorinBéatrice GulbisUte HoltkampBaba InusaJohn JamesMarina KleanthousJeannette KleinJoachim B KunzLisa LangabeerClaudine LapouméroulieAna MarcaoJosé L Marín SoriaCorrina McMahonKwaku Ohene-FrempongJean-Marc PériniFrédéric B PielGiovanna RussoLaura SainatiMarkus SchmuggeAllison StreetlyLeon TshiloloCharles TurnerDonatella VenturelliLaura VilarinhoRachel YahyaouiJacques ElionRaffaella Colombattinull nullPublished in: British journal of haematology (2018)
Sickle Cell Disease (SCD) is an increasing global health problem and presents significant challenges to European health care systems. Newborn screening (NBS) for SCD enables early initiation of preventive measures and has contributed to a reduction in childhood mortality from SCD. Policies and methodologies for NBS vary in different countries, and this might have consequences for the quality of care and clinical outcomes for SCD across Europe. A two-day Pan-European consensus conference was held in Berlin in April 2017 in order 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. More than 50 SCD experts from 13 European countries participated in the conference. This paper aims to summarise the discussions and present consensus recommendations which can be used to support the development of NBS programmes in European countries where they do not yet exist, and to review existing programmes.