Guidance

Sickle cell and thalassaemia: screening handbook

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

Documents

Sickle cell and thalassaemia screening overview

Patient societies

Counselling and referral for prenatal diagnosis (PND)

Antenatal screening: special circumstances

Failsafe, quality assurance and data collection

Support and training

Appendix 1: pathway for counselling and referral for PND

This file may not be suitable for users of assistive technology. Request an accessible format.

If you use assistive technology (such as a screen reader) and need a version of this document in a more accessible format, please email publications@phe.gov.uk. Please tell us what format you need. It will help us if you say what assistive technology you use.

Appendix 2: at risk pregnancy alert form

This file may not be suitable for users of assistive technology. Request an accessible format.

If you use assistive technology (such as a screen reader) and need a version of this document in a more accessible format, please email publications@phe.gov.uk. Please tell us what format you need. It will help us if you say what assistive technology you use.

Appendix 3: PND outcome form

This file may not be suitable for users of assistive technology. Request an accessible format.

If you use assistive technology (such as a screen reader) and need a version of this document in a more accessible format, please email publications@phe.gov.uk. Please tell us what format you need. It will help us if you say what assistive technology you use.

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 9 January 2018 + show all updates
  1. Added 'antenatal screening: special circumstances' chapter.
  2. Added new sections: Sickle cell and thalassaemia screening overview; Patient societies; Failsafe, quality assurance and data collection; Support and training.
  3. Added new html edition of programme handbook.
  4. First published.