Guidance

Sickle cell and thalassaemia screening: outcome data collection template

Template to record and submit newborn outcomes data for the sickle cell and thalassaemia (SCT) screening programme.

• From: Public Health England
• Published: 31 March 2017
• Last updated: 16 July 2019 — See all updates

Documents

Newborn outcomes data collection form

MS Excel Spreadsheet, 202 KB

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Details

The collection of SCT outcomes relies on data from screening laboratories and treatment services.

We are in the process of rolling out a new IT system that will improve the process for referring babies who have a positive SCT screening test from the newborn screening laboratories into care and automate the data collection for NCARDRS.

Healthcare professionals should use this form to record and submit data until they are using the new IT system.

Download and complete the form to:

• notify the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) of new babies, born in England with suspected sickle cell disease or thalassaemia
• notify NCARDRS of children who present clinically
• provide evidence that screen positive results have been given to parents
• provide evidence of enrolment into care
• provide clinical data

Please email the completed form to NCARDRS via scts.evaluation@nhs.net from an NHS.net email address.

If you have any queries or problems completing or returning the form please email scts.evaluation@nhs.net.

Newborn outcomes data collection and processing

Use the process flowchart to see the whole pathway and actions for healthcare professionals. The flowchart includes actions for:

• babies with a newborn blood spot screen positive result
• clinical presentation of an affected child or infant

Published 31 March 2017
Last updated 16 July 2019 + show all updates

1. 16 July 2019

   Added information about newborn outcomes system.

2. 8 August 2017

   Updated form to version 2.2.

3. 31 March 2017

   First published.