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.

• From: NHS England
• Published: 1 January 2013
• Last updated: 6 October 2022 — See all updates

All screening providers need to record data about their activity. NHS England 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.

• Sickle cell and thalassaemia screening: antenatal lab data form
  • 31 March 2023
  • Form
• Data submission template: maternity service
  • 20 February 2024
  • Form
• Newborn blood spot screening: data collection template
  • 9 June 2021
  • Form

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.

• Antenatal screening standards: data report 2020 to 2021
  • 6 October 2022
  • Official Statistics
• Antenatal screening standards: data report 2019 to 2020
  • 27 July 2021
  • Official Statistics
• Antenatal screening standards: data report 2018 to 2019
  • 28 October 2020
  • Official Statistics
• Antenatal screening standards: data report 2017 to 2018
  • 28 February 2020
  • Research and analysis

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.

• Sickle cell and thalassaemia screening: data report 2019 to 2020
  • 13 April 2022
  • Research and analysis
• Sickle cell and thalassaemia screening: data report 2018 to 2019
  • 29 March 2021
  • Research and analysis
• Sickle cell and thalassaemia screening: data report 2017 to 2018
  • 2 March 2020
  • Research and analysis
• Sickle cell and thalassaemia screening: data trends and performance analysis
  • 11 June 2018
  • Research and analysis

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.

• NHS population screening: data requests and research
  • 29 September 2021
  • Guidance

SCT screening: the information we use

• Patient confidentiality in NHS population screening programmes
  • 29 November 2022
  • Guidance

Published 1 January 2013
Last updated 6 October 2022 + show all updates

1. 6 October 2022

   Addition of antenatal standards report 2020 to 2021

2. 13 April 2022

   Added the sickle cell and thalassaemia screening data report for 2019 to 2020

3. 27 July 2021

   Added 'Antenatal screening programmes: annual standards data collection' and 'Antenatal screening standards: data report 2019 to 2020'.

4. 27 May 2021

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

5. 28 October 2020

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

6. 12 June 2017

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

7. 1 January 2013

   First published.