https://phescreening.blog.gov.uk/2018/07/16/updated-sickle-cell-and-thalassaemia-screening-handbook-published/

Updated sickle cell and thalassaemia screening handbook published

We are pleased to announce the publication of the updated sickle cell and thalassaemia (SCT) screening handbook on GOV.UK.

Thank you to everyone who took part in the consultation earlier this year on the handbook that provides guidance and support to healthcare professionals involved in the SCT screening pathway. Your valuable feedback has helped make sure the handbook meets the needs of our users.

The document is in easily accessible HTML format. You simply navigate through the chapters online although you can still print out individual chapters and appendices if you need to.

The SCT Programme screens pregnant women to find out if they’re at risk of having a baby with sickle cell disease or thalassaemia major. It also screens babies for sickle cell disease as a part of the newborn blood spot screening programme.

Haemoglobin disorder inheritance diagram
The haemoglobin disorder inheritance diagram that is included in the Understanding haemoglobinopathies chapter of the programme handbook

Wide range of guidance and resources

The updated handbook includes information about:

  • the antenatal screening pathway with specific guidance on how to care for known ‘at-risk’ couples
  • the antenatal screening process and how to follow up results
  • the family origin questionnaire and important issues for completion in high and low prevalence trusts
  • special circumstances to be aware of during antenatal screening, including adoption, blood transfusions and bone marrow transplant
  • paternal screening and tips to improve participation
  • counselling and referral for prenatal diagnosis
  • 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
  • patient support organisations
  • failsafe, quality assurance and data collection
  • resources and training courses to support the screening programme

If you would like a copy of the consultation report please contact the screening helpdesk at phe.screeninghelpdesk@nhs.net.

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