Our Support To Research
Page last updated: April 2022
Funding of Research
We now support a 4-year SMA research focused PhD in the UK and contribute funding to projects selected by SMA Europe via their bi-annual call for research proposals.
As members of SMA Europe we take part in the many research related initiatives it promotes and generates
Dr. James Sleigh, Scientific Research Correspondent, and Vanessa Christie-Brown, our Research Coordinator, are both employed in other capacities elsewhere but together provide the expertise needed to keep our research and clinical trials pages up to date.
SMA UK & Community Input into Research
SMA researchers often ask our Support Services Team for insights into the impact of SMA on people's daily lives. We also enable opportunities for people's own voices to be heard directly via surveys, consultations and focus groups - invitations are posted on our research noticeboard, as well as in our monthly E-newsletter and on social media.
UK SMA Patient Registry
SMA UK was pleased to fund this important ‘patient-facing’ database over many years until, in 2020 the pharmaceutical industry took over this supporting role. Coordinated from the John Walton Muscular Dystrophy Research Centre at Newcastle University, the patient registry is now playing a lead role collecting patient-reported outcome data that will contribute to reviews of the effectiveness of new treatments. SMA UK joins clinicians, MDUK and Treat SMA as part of the patient registry steering committee.
Rare Disease Day
This day takes place annually on the last day of February. We always take part in an event to raise awareness of SMA.
Following the merger between SMA Support UK and the SMA Trust in 2018, SMA UK inherited a fantastic legacy of £5 million donated to research projects as well as a continuing commitment to work with the SMA Community campaigning for access to treatments that have been proven effective in clinical trials. This page shows previous research-related projects up to 2020.