Guidance

Phenylketonuria (PKU): information for parents

Information for parents of babies with possible phenylketonuria (PKU) following a baby’s screening test result.

• From: NHS England
• Published: 1 October 2010
• Last updated: 4 April 2025
  Show all updates

  1. 4 April 2025

     Changed lead organisation to NHS England. Removed reference to screening helpdesk. Removed references to PHE. Deleted PDFs.

  2. 18 November 2021

     Combined separate 'overview' and 'further information' leaflets into one publication. Changed 'overview' to 'summary' and 'further information' to 'detailed information'.

  3. 22 July 2021

     Updated in line with clinical guidance.

  4. 17 August 2020

     Converted attachment from PDF to HTML.

  5. 4 April 2016

     One of a suite of updated inherited metabolic diseases leaflets.

  6. 1 October 2010

     First published.

Applies to England

Documents

Phenylketonuria (PKU): summary

HTML

Phenylketonuria (PKU): detailed information

HTML

Details

Information and advice for parents of babies with suspected PKU following newborn blood spot screening.

Healthcare professionals should use it to support them in their conversations with parents.