Guidance

Homocystinuria (HCU): information for parents

Information for parents about homocystinuria (HCU) following a baby’s screening test result.

• From: NHS England
• Published: 1 August 2013
• Last updated: 24 July 2025
  Show all updates

  1. 24 July 2025

     Changed lead organisation from Public Health England to NHS England. Removed reference to screening helpdesk. Removed references to PHE.

  2. 18 November 2021

     Combined separate 'overview' and 'further information' leaflets into one publication. Changed 'overview' to 'summary' and 'further information' to 'detailed information'. Addition of plain A4 PDF version for printing, to provide for people unable to access this information online.

  3. 22 July 2021

     Updated with latest clinical guidance.

  4. 17 August 2020

     Converted attachment from PDF to HTML.

  5. 4 April 2016

     One of a suite of revised and updated inherited metabolic disease leaflets.

  6. 1 August 2013

     First published.

Applies to England

Documents

Homocystinuria (HCU): summary

HTML

Homocystinuria (HCU): summary (for print)

PDF, 143 KB, 3 pages

This file may not be suitable for users of assistive technology.

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

Homocystinuria (HCU): detailed information

HTML

Homocystinuria (HCU): detailed information (for print)

PDF, 153 KB, 4 pages

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 england.contactus@nhs.net. Please tell us what format you need. It will help us if you say what assistive technology you use.

Details

Information and advice for parents of babies with suspected HCU following newborn blood spot screening. Healthcare professionals should use it to support them in their conversations with parents.

This information is available in A4 PDF format (in English) to print out and provide for people who cannot access digital information (see list above).

Contact the screening helpdesk with any queries about this publication, making sure you include its full title.