SMA CARE UK
SMA CARE UK is a collaborative initiative between patients, the SMA REACH networks and other health care professionals to update, harmonise and support the implementation of evidence-based standards of care for all those living with SMA across the UK. The project is led by Dr Anne-Marie Childs and Professor Chiara Marini-Bettolo and hosted by SMA UK and Newcastle University.
Experts will review the current recommendations and identify areas that require revision, on the basis of new evidence, changing practice and unmet need. Where there are gaps in knowledge, potential strategies will be explored to gather relevant evidence. Final recommendations will be published after consultation with wider clinical and patient networks, in the form of both professional and ‘patient- friendly’ guidance. Endorsement for the guidance will be sought from relevant professional bodies and recommendations will be presented at academic and patient conferences.
It is hoped that the development of a ‘minimum’ UK standard of care will support professionals and families in addressing any inequalities in care across different services and regions of the UK.
If you would like to find out more, or you would like to get involved, please contact the SMA Care UK Project Manager, Vanessa at: vanessa.christie-brown@smauk.org.uk or visit there website at https://smauk.org.uk/sma-care-uk/
