Collection

Sickle cell and thalassaemia screening: data and research

Data reports, data collection templates and research application guidance for the NHS sickle cell and thalassaemia (SCT) screening programme.

All screening providers need to record data about their activity. Public Health England screening produces guidance on what data to provide and how to provide it.

SCT screening: data collection forms

Two forms are available for data collection from antenatal screening laboratories. The forms reflect different care pathways in high and low prevalence areas.

Maternity providers use a separate process to provide quarterly key performance indicator (KPI) data and other data against national SCT screening standards.

Antenatal screening: annual standards reports

The annual joint standards report presents data collected against standards for sickle cell and thallasaemia (SCT), fetal anomaly and infectious diseases in pregnancy screening programmes.

SCT screening: annual programme statistics reports

These reports data collected from antenatal, prenatal diagnostic (PND), DNA and newborn screening laboratories.

Before 1 April 2017 to 31 March 2018, the reports also contained KPI data.

SCT screening: data requests and research

Any research activity must be undertaken in line with current legislation and guidance. Access to data sets comprising identifiable or potentially identifiable screening data or tests requires appropriate legal gateway assurances.

SCT screening: the information we use

Published 1 January 2013
Last updated 27 July 2021 + show all updates
  1. Added 'Antenatal screening programmes: annual standards data collection' and 'Antenatal screening standards: data report 2019 to 2020'.

  2. Added link to 2018 to 2019 SCT data report in annual programme statistics reports section.

  3. Added link to antenatal screening standards: data report 2018 to 2019.

  4. Addition of Sickle cell and thalassaemia screening: outcome data template and guidance to document collection

  5. First published.