Part of the project involves setting up a database, which will hold anonymised information about individuals with spinal muscular atrophy and the clinical changes which may occur in the condition over time.
This information, collected over several years, will help clinicians and physiotherapists give accurate information to families about the progress of spinal muscular atrophy and provide tailored clinical advice. SMArtNet will look at a range of measures including motor function, respiratory measures, muscle strength and functional activities.
It is planned that this database will form the backbone for clinical trials in spinal muscular atrophy so we can collaborate further with our European and international partners.
A similar database has been created for those with Duchenne muscular dystrophy, called the North Star Project. This has proved very successful and SMArtNet will work alongside its sister project.
Work in progress includes:
Establishing the use of three motor function assessments for reviewing ambulant and non-ambulant patients with spinal muscular atrophy. This includes reliability testing and regular site visits.
Creating medical and physiotherapy assessment forms, which will form the basis for clinical note taking as well as a means of populating the database.
Working with the design company to create a national database for collecting longitudinal outcome measures for individuals with spinal muscular atrophy.
Working with TREAT-NMD and the newly launched spinal muscular atrophy registry to form links between these databases.
Reviewing the literature around outcome measures in spinal muscular atrophy and neuromuscular disease in general.
Creating links with our international partners and supporting the neuromuscular network here in the UK.