SCT newborn outcomes solution: overview
Updated 21 September 2021
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Solution overview
The sickle cell and thalassaemia (SCT) newborn outcomes solution is a web-based solution used by laboratories, nursing centres and treatment centres to make referrals for babies screened positive for SCT.
The solution:
- allows users to view the status of patients along the care pathway, for example to enable a referring laboratory to see that a screen positive baby has entered into care
- automates the gathering and reporting of newborn outcome data on sickle cell and thalassaemia screen positive babies
National Congenital Anomaly and Rare Disease Registration Service (NCARDRS)
Data from the solution is automatically sent to NCARDRS. NCARDRS has permission to collect patient-identifiable data without the need for individual informed consent on all suspected and confirmed congenital anomalies and rare diseases in England.
This permission is from the National Information Governance Board under section 251 of the NHS Health ACT 2006 and the authority of the Health Service (Control of Patient Information) Regulations 2002 (CAG ref: CAG 10-02(d)/2015).
The long-term storage of antenatal and newborn screening outcomes data is within the remit of NCARDRS.
NHS sickle cell and thalassaemia screening programme
Non-identifiable data from the solution is automatically sent to the national sickle cell and thalassaemia screening programme team in Public Health England (PHE). This makes the process for submitting data to the programme much easier.
When you are using the solution for all sickle cell and thalassaemia screen positive referrals you will no longer need to manually send key performance indicator data to PHE.
National Haemoglobinopathy Register (NHR)
The solution also integrates with the National Haemoglobinopathy Register (NHR). The NHR is an important asset for the NHS, used to track patients with red blood cell disorders throughout their lifetime.