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News


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Date posted: 13-May-2014

PHE Press Release - Expansion of Newborn Screening Programme

Public Health England - Press Release

New screening will protect babies from death and disability

Today the UK National Screening Committee (UK NSC) announced its recommendation to screen every newborn baby in the UK for four new genetic disorders.

Downloads

PHE Press Release


Date posted: 2-Apr-2013

National / International Coverage

PILOT SCREENING SCHEME SAVES BABY'S LIFE
28 February 2013









 



Date posted: 23-Mar-2013

Continuation of Screening until 31st March 2014

We are pleased to announce that the UK National Screening Committee has provided funds to extend the period of testing until 31st March 2014. This will allow the UK NSC to receive the full evaluation of the pilot and take a view on whether a full national roll out is appropriate beyond this point. The letter from Dr Anne MacKie, Director of Programmes at the UK National Screening Committee confirming these arrangements can be downloaded from the expanded screening website.


Extension of the period of testing has required updating of the parent and professional leaflet to provide information on the new end date and the anticipated number of cases over the time period.  The new leaflet (version 19) is available from the website now and participating organisations should have received a new batch of information leaflets from Harlow Printing in March or April.  Please can you ensure that copies of this leaflet are distributed to all midwives in your team and that previous versions are destroyed. 


Written and Audio translations have also been updated and can be accessed here.





Date posted: 26-Feb-2013

6 new films about living with a rare metabolic disorder

Living with a Rare Metabolic Disorder: A series of Short Films


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Date posted: 18-Jul-2012

430,000 newborns to be tested in new screening test

Thousands of babies in six areas across the country are to be screened for five rare diseases which - undetected - cause severe disability.

Around 430,000 newborns will be tested in the year long study, which starts today, and about 16 children are expected to be diagnosed and treated early enough to help them live normal lives.

More about this . .


Date posted: 18-Jul-2012

Sheffield babies take part in screenings for rare diseases

A pilot study starting this week will see thousands of Sheffield babies taking part in tests for five rare diseases.

Around 430,000 newborns across the country will be tested in the year-long study, which starts on Monday.

About 16 children are expected to be diagnosed and treated early enough to help them live normal lives.

The study will help determine if undiagnosed illnesses can be prevented from developing in children.

Working in partnership with the South Yorkshire Collaboration for Leadership in Applied Health Research and Care, Sheffield will co-ordinate the actions of six centres across the country.

More about this . .


Date posted: 18-Jul-2012

Thousands of Birmingham newborns to be tested in new screening test

Thousands of babies in six areas across the country, including Birmingham, are to be screened for five rare diseases which - undetected - cause severe disability.

Around 430,000 newborns will be tested in the year long study, which starts today, and about 16 children are expected to be diagnosed and treated early enough to help them live normal lives.

More about this . .


Date posted: 21-May-2012

Pilot Launches 16 July 2012

The pilot will take place from  16th July 2012 until 19th July 2013 in six screening laboratories and the areas they serve:  these are

  • Leeds
  • Manchester
  • Sheffield
  • Birmingham
  • London (St. Thomas)
  • London (GOSH)

Approximately 430,000 babies will be screened for the five extra conditions

  • Maple syrup urine disease (MSUD)
  • Homocystinuria, pyridoxine unresponsive, (Hcys)
  • Glutaric aciduria type 1 (GA1)
  • Isovaleric acidaemia (IVA)
  • Long-chain hydroxyacyl-CoA dehydrogenase deficiency (LCHADD)

 


Date posted: 21-May-2012

BBC News Announcement

Expanded Newborn Screening Pilot was announced in the BBC news website on 8 April 2012.

More about this . .