Cystic fibrosis (newborn)
The UK NSC policy on Cystic fibrosis screening in newborns
More Information
Cystic Fibrosis (CF) was recognised as a specific entity by Dorothy Andersen of New York in 1938. The condition is characterised by early onset of severe intestinal malabsorption, failure to thrive and recurrent chest infections and pneumonia which, if untreated, leads to death from malnutrition and respiratory failure in infancy or early childhood. Due to improved treatment, particularly with antibiotics and better pancreatic enzyme replacement therapy, average survival has steadily improved to around 37 years.
» Read more about cystic fibrosis on the Contact a Family website
Policy Position
Screening is offered to all newborn babies.
This policy was reviewed in Jul 2006 but no significant changes were made. It is due to be considered again in 2009/10, or earlier if significant new evidence emerges.
Screening in the UK
Compare how screening is offered across the UK.
Evidence Supporting the Policy
The Child Health Sub-Group of the UK NSC reported to the UK NSC in 2003 that on the evidence available, a national neonatal screening programme should not be introduced. However, as one fifth of babies were already being screened in the UK, considerations of equity could not be ignored. The Minister of State for Health decided that screening should be introduced.
Child Health Sub-Group review against the UK NSC criteria for neonatal cystic fibrosis screening - updated May 2005 (see below).
Stakeholders
Cystic Fibrosis Trust
Genetic Alliance UK
Institute of Child Health
Royal College of General Practitioners
Royal College of Midwives
Royal College of Paediatrics and Child Health
The stakeholder groups will be involved when the policy is next reviewed. If you think your organisation should be added, please contact us.
