Newborn Screening for SMA

Programmes are now in place or being trialled in other parts of the world. On 31st August 2020, the European Alliance for Newborn Screening was launched. In the UK in 2019, the National Screening Committee, which reviews whether such a programme should happen here did not recommend one. Now there is evidence that early diagnosis and treatment of SMA leads to better outcomes, stakeholders in the UK are working to change this decision and achieve NBS for SMA in the UK.
 

Screening News Updates

2020

31st August

SMA Europe and partners launch the European Alliance for Newborn Screening

14th February

SMA EXPERTS RECOMMEND NEWBORNS WHO HAVE 2, 3 OR 4 SMN2 COPIES, DIAGNOSED VIA NEWBORN SCREENING, SHOULD HAVE IMMEDIATE ACCESS TO TREATMENT
 

2019

23rd July:

Launched today by The Genetic Alliance, SMA UK is a signatory to the Patient Charter for Newborn Screening in the UK

18th February:
National programme for carrier or newborn screening for SMA not recommended by UK National Screening Committee (NSC)
 

2018

13th November:
SMA UK BUSY HEADING OUT AND ABOUT

11th September:
Our Response To The UK National Screening Committee Review of Screening for SMA

3rd August:
‚ÄčWHAT ARE YOUR VIEWS ON SCREENING NEWBORNS FOR SMA?

SMA and Screening: The Views of Families - The Imagining Futures Research

Dr. Felicity Boardman’s Project Report

In April 2017, Felicity was appointed to the Foetal, Maternal and Child Health Reference group of the National Screening Committee and will be directly inputting on the literature review for the next national screening consultation due soon. The review will include her research. You can read her report and what subsequent work is taking place, here.