• Screen babies on day 5 of age (date of birth = day 0) for the following conditions:
  
  • sickle cell disease
  • phenylketonuria (PKU)
  • congenital hypothyroidism (CHT)
  • cystic fibrosis
  • medium chain acyl co-A dehydrogenase deficiency (MCADD)
  • maple syrup urine disease (MSUD)
  • isovaleric acidaemia (IVA)
  • glutaric aciduria type 1 (GA1)
  • homocystinuria (HCU)
  • severe combined immunodeficiency (SCID)

Co-ordinate with other tests when possible to minimise invasive procedures

If transfused before day 5

• Collect first bloodspot card before transfusion
  
  • fill 1 circle
  • mark card ‘pre-transfusion’
• Collect second bloodspot card at aged 5–8 days and ≥72 hr after blood transfusion
  
  • fill 4 circles
• record whether plasma or red cells transfused
• Staple pre-transfusion and second bloodspot card together and send to West Midlands screening centre via courier service after validation check
• If baby has not received a blood transfusion the pre-transfusion bloodspot card can be discarded appropriately

Multiple transfusions between aged 5–8 days

• Collect 4 bloodspots within this window. Complete with as much time-lapse as possible from any transfusion
• If ≤3 clear days between the last transfusion and routine sample, a repeat sample to be taken ≥3 clear days after the last transfusion

No transfusions before day 5

• Collect routine bloodspot card at day 5
  
  • fill 4 circles and send to West Midlands screening centre via courier service after validation check, irrespective of milk feeds or gestational age

• Person undertaking procedure must:
  
  • offer parents an informed choice about screening for their baby, to gain consent and prepare them for the blood sampling procedure
  • provide national pre-screening leaflet at least 24 hr before procedure
  • parents must understand that they are consenting to storage of residual bloodspots, these can be used for: 
    
    • checking screening results
    • monitoring and improving the screening programme and health research that does not identify babies
• It is mandatory to include baby’s NHS number on the bloodspot card
• If screening declined:
  
  • for all conditions – send completed card to screening laboratory (without blood sample) clearly marked DECLINE – ALL CONDITIONS
  • inform GP, health visitor and Child Health Records Department, in writing, of conditions baby not screened for
    
    • template letters available from: https://www.gov.uk/government/publications/declined-newborn-blood-spot-screening-template-letters

Further information

Detailed information regarding the UK Newborn screening programme can be sourced from:

• Newborn bloodspot screening programme handbook: https://www.gov.uk/government/publications/health-professional-handbook-newborn-blood-spot-screening
• Standards for NHS newborn bloodspot screening: https://www.gov.uk/government/publications/standards-for-nhs-newborn-blood-spot-screening
• Newborn bloodspot screening sampling guidelines: https://www.gov.uk/government/publications/newborn-blood-spot-screening-sampling-guidelines