Severe combined immunodeficiency (SCID) is a rare disorder whereby a child is born without a properly functioning immune system. It can be cured, but without early diagnosis and proper treatment, babies die before their first birthday. The US is about to introduce systematic newborn screening for SCID nationwide, and some EU Member States are considering including SCID in the list of diseases that newborns are screened for. Such measures could save many lives each year across Europe. As simple, effective screening tests and a complete cure from the condition are available, newborn screening for SCID is considered to be a paediatric priority by healthcare professionals in the field.
The European Commission launched a call for tender in June 2009 in order to gather expertise on newborn screening (NBS) practices in Member states, as announced in Communication No 679 of 11 November 2008.
An EU Network of experts on NBS has been set up, and the European Commission will use the findings of this network to draft a proposal for a Council Recommendation by the end of 2012 at the earliest.
Can the European Commission inform Parliament of the progress made so far on the proposal for a Council recommendation on newborn screening?
Considering the fact that it could save the lives of babies affected by SCID, does the European Commission agree that SCID newborn screening should be included in this Council recommendation?
Does the European Commission agree that the EU should organise an exchange of best practices in systematic screening for SCID?