Newborn Screening for SMA
Last updated 28th October 2021
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. SMA UK is actively working with Alliances both in the UK and Europe.
What’s happening about Newborn Screening for SMA in the UK?
The short answer is there is a lot of ‘behind the scenes’ activity and that SMA UK is very much part of this. You can expect to hear more in the very near future. In the meantime, this brief summary updates you on the activity so far.
Previously in 2021:
Launched today by The Genetic Alliance, SMA UK is a signatory to the Patient Charter for Newborn Screening in the UK.
SMA UK BUSY HEADING OUT AND ABOUT
WHAT 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.