Guidance

Sickle cell and thalassaemia (SCT) screening: programme overview

Information on the programme, including the screening tests, commissioning, quality assurance, education and training.

Public information about SCT screening is available on the NHS website.

There are no risks associated with screening for SCT. It can however provide information that may mean families have to make further important decisions. It is an individual’s choice whether or not to be screened.

The SCT laboratory handbooks set out interpretation and reporting guidelines related to laboratory processes, including which types of carrier states to report.

There is guidance on DNA testing for transfused babies which sets out the recommendations and processes for offering DNA tests to babies who have had a blood transfusion before newborn blood spot screening.

Public Health England (PHE) is committed to reducing inequalities and variation in participation to help make sure everyone has fair and equal access to screening services.

PHE has also published information about patient confidentiality in population screening programmes.

Target population

Antenatal screening

Sickle cell disease (SCD) screening is offered to:

SCD screening is offered to all pregnant women in high prevalence areas. This is done using a simple blood test.

In low prevalence areas, the family origin questionnaire (FOQ) is used to determine if a person is likely to be a carrier for SCD or other haemoglobin disorder.

All pregnant women are offered screening for thalassaemia.

All biological fathers are offered screening if the pregnant woman is a genetic carrier for sickle cell disease or thalassaemia.

There are special circumstances where additional investigations may be required.

Newborn screening

All newborn babies are offered sickle cell screening as part of the newborn blood spot screening programme, usually when they are 5 days old.

Conditions screened for

The programme screens for:

Screening tests

The following screening tests may be offered:

Evidence base

SCT screening is one of 11 NHS national population screening programmes available in England.

The UK National Screening Committee (UK NSC) makes recommendations to ministers in the 4 UK countries on all aspects of population screening. It ensures that screening provides more benefit than harm, at a reasonable cost to the NHS.

Recommendations are based on internationally recognised criteria and a rigorous evidence review process.

There are separate UK NSC recommendations on:

Data and intelligence

PHE publishes reports setting out annual data collected from the linked antenatal and newborn SCT screening programme.

For 1 April 2017 to 31 March 2018 data onwards, PHE publishes a joint antenatal screening standards data report.

Key performance indicator (KPI) data reports are available for all 11 national screening programmes.

Requests for screening data and research

All requests for SCT screening data need to be approved by the antenatal and newborn (ANNB) screening research advisory committee (RAC).

PHE also has terms of reference for NHS population screening programme RACs.

Commissioning

All SCT screening commissioners must follow the relevant service specification (specification number 18) and use the supporting documents to ensure the screening service set up is fit for purpose and meets the required standards.

Quality assurance

Guidance is available on the SCT programme’s processes for ensuring a seamless and safe screening pathway.

The programme specific operating model for quality assurance of the SCT programme should be read in conjunction with the latest SQAS operating model and the relevant programme standards.

There are guidelines on handling patient information about how to use and safeguard personal data in screening.

Workforce – education and training

Training and continuing professional development (CPD) resources are available for people working in SCT screening in England.

There are also more general resources to support screening professionals in their initial training and CPD.

There is a visual representation of the SCT screening care pathways.

Keep up to date

Visit the Public Health England (PHE) screening blog to keep up to date with what is new in the programme, including the latest guidance and good practice. You can register to receive blog updates direct to your inbox.

PHE Screening also has its own Twitter account, which provides information and news on all national screening programmes.

Contact the screening team

Population screening helpdesk

PHE Screening
Floor 5
Wellington House
133-155 Waterloo Road

London
SE1 8UG

The helpdesk is not for media enquiries and does not have access to screening results. For queries about results, contact your GP or local screening service. Order screening leaflets at www.gov.uk/phe/screening-leaflets.

Published 1 January 2013