Why should countries include SCID in the Newborn Screening programmes?
Screening for SCID immediately after birth is possible and can be performed on dried blood spot samples which are currently collected in a standardised fashion from all newborns in all European Union Member States. SCID is the only screenable PID condition that can be cured with treatments such as Hematopoietic Stem Cell Transplantation (HSCT) or gene therapy.
The transplantation should be done within the first 3,5 months of life to be effective. Delay in diagnosis reduces the success of HSCT as a curative option and generally leads to death. Screening and detection at birth offer the vital chance to intervene before severe infection affects chances of survival.
SCID newborn screening fulfils all the internationally recognised criteria for a clinical condition to be screened for at birth.
From a health economic perspective, data shows that screening for SCID would be cost-efficient according to the UK standards.
SCID newborn screening programmes are rapidly being implemented in several regions of the world. Many EU member states have national or regional pilot studies on SCID newborn screening ongoing, including France, Italy, Sweden and Spain.
In the Netherlands, the Ministry of Health issued a report in June 2015 qualifying SCID for inclusion in the newborn screening panel of diseases. A pilot project and an economic study are being developed before its final inclusion in the panel.
In the United States in 2010, the Department of Health and Human Services (HHS) announced the addition of SCID to the recommended uniform screening. Currently, 44 US states screening all newborns for SCID.
In Israel, SCID newborn screening was implemented at the national level following a call to action from the scientific community.