Guidance

Sickle cell and thalassaemia: screening handbook

Guidance for healthcare professionals covering the pathway for sickle cell and thalassaemia screening.

• From: Public Health England
• Published: 1 January 2012
• Last updated: 6 July 2018 — See all updates

Documents

Sickle cell and thalassaemia screening overview

HTML

Patient societies

HTML

Understanding haemoglobinopathies

HTML

Antenatal screening

HTML

Counselling and referral for prenatal diagnosis (PND)

HTML

Antenatal screening: special circumstances

HTML

Newborn screening

HTML

Failsafe, quality assurance and data collection

HTML

Support and training

HTML

Appendix 1: Haemoglobinopathy carriers

PDF, 301 KB, 5 pages

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Appendix 2: Benign haemoglobin conditions

PDF, 250 KB, 2 pages

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Appendix 3 – Sickle cell disease

PDF, 368 KB, 3 pages

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Appendix 4: Thalassaemia conditions

PDF, 81.7 KB, 2 pages

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Appendix 5: example of affected baby counselling form

PDF, 39.9 KB, 1 page

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Appendix 6: pathway for counselling and referral for PND

PDF, 95.7 KB, 1 page

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Appendix 7: at risk pregnancy alert form

PDF, 102 KB, 1 page

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Appendix 8: PND outcome form

PDF, 166 KB, 3 pages

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Appendix 9: Sample neonatal screening and counselling form

MS Word Document, 67.5 KB

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Details

This handbook includes guidance for healthcare professionals who provide counselling and referral for prenatal diagnosis (PND) to couples and women at risk of having a baby with sickle cell disease or thalassaemia major.

The complete handbook covers all stages of the screening pathway, including:

• the antenatal pathway with guidance on caring for known ‘at-risk’ couples
• the screening process and how to follow up screening results
• the family origin questionnaire and the issues for completion in high and low prevalence trusts
• special circumstances to be aware of during antenatal screening such as adoption, blood transfusion and bone marrow transplant
• paternal screening and tips to improve participation
• testing in subsequent pregnancies
• the newborn screening pathway, what results are expected and how to deal with them
• sickle cell disease, thalassaemia major and other haemoglobinopathy disorders and carrier states
• failsafe, quality assurance and data collection
• resources and training courses to support the screening programme

Published 1 January 2012
Last updated 6 July 2018 + show all updates

1. 6 July 2018

   Added Understanding haemoglobinopathies, antenatal screening and SCT newborn screening chapters to handbook.

2. 9 January 2018

   Added 'antenatal screening: special circumstances' chapter.

3. 21 December 2017

   Added new sections: Sickle cell and thalassaemia screening overview; Patient societies; Failsafe, quality assurance and data collection; Support and training.

4. 4 October 2017

   Added new html edition of programme handbook.

5. 1 January 2012

   First published.