https://phescreening.blog.gov.uk/2019/03/11/were-updating-the-clinical-care-standards-for-children-with-sickle-cell-disease-and-want-your-views/

We’re updating the clinical care standards for children with sickle cell disease and want your views

We are working with the Sickle Cell Society to update the Sickle Cell Disease in Childhood: Standards and guidelines for clinical care 2nd edition.

The clinical leads for the review are Professor David Rees, Professor of paediatric sickle cell disease at King's College London, and Dr Moira Dick, retired paediatric consultant at King's College Hospital.

A picture of the front cover of the sickle cell disease standards from 2010 with the words 'we want your views on the clinical care standards'
We are consulting on the revised clinical care standards component only. We will consult on the guidelines section separately.

Please take this opportunity to review the revised standards and feed back any comments. You can comment on all or some depending on relevance to you and your role.

There are 9 standards. These are:

  • standard 1 – reporting newborn screen positive results to parents (PHE screening programme standard)
  • standard 2 – timely follow-up, diagnosis and treatment of newborn infants with a positive screening result (PHE screening programme standard)
  • standard 3 – timeliness of penicillin prophylaxis
  • standard 4 – coverage of pneumococcal immunisation at 2 years
  • standard 5 – coverage of transcranial doppler (TCD) scanning
  • standard 6 – multidisciplinary review of stroke
  • standard 7 – coverage of hydroxycarbamide (hydroxyurea) therapy
  • standard 8a and 8b – coverage of children on the national haemoglobinopathy registry (NHR)
  • standard 9 – mortality rates

The consultation will close on Friday 22 March at 5:00pm.

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