Templates to record and submit data for the sickle cell and thalassaemia (SCT) screening programme's newborn outcomes project.
The newborn outcomes project relies on screening laboratory data to assess the linked antenatal and newborn sickle cell and thalassaemia (SCT) screening programme.
Healthcare professionals working in these laboratories should use these forms to record and submit data for:
all babies, born in England or moving in, up to 1 year of age with suspected sickle cell disease or thalassaemia
newly diagnosed children over 1 year old
Newborn outcomes data notification and referral form
Use this clinical data form to:
facilitate initial clinical referral of a screen positive baby from the newborn screening (NBS) laboratory to the clinician
provide evidence of enrolment into care
give clinical data from the clinician back to the NBS laboratory
Newborn outcomes data notification and referral form: Central Middlesex Hospital (CMX)
CMX provides second line testing for several newborn screening laboratories.
Use the CMX form to notify a screen positive baby directly to a sickle cell centre.
The centre will take responsibility for onward referral to the clinician at the relevant haemoglobinopathy centre.
Newborn screening laboratories using CMX for second line testing, but managing the initial clinical referral of a screen positive baby to the clinician at the haemoglobinopathy centre should use the newborn outcomes data notification and referral form.