The North Star Network was set up in 2003 to help drive improvements in services and set national standards of care for children living with Duchenne muscular dystrophy (DMD). The overall aim is to optimise the care of young patients with Duchenne muscular dystrophy (DMD) by achieving and practicing consensus on best clinical management, with agreed assessment and treatment protocols, no matter which clinical centre is attended.
A national database was established in October 2006 to collect data from children with Duchenne muscular dystrophy followed in all the major paediatric neuromuscular centres in the UK. The database has helped improve clinical care and led to major breakthroughs such as the use of steroids in children with Duchenne.
Muscular Dystrophy UK are now working with neuromuscular specialists that see adults with Duchenne to extend the North Star network and ensure that the same level of support is provided in adult care.
Below are some useful resources for physiotherapists that may undertake North Star Assessments with patients who have Duchenne muscular dystrophy:
- The North Star Physiotherapists manual
- The North Star Ambulatory Assessment (NSAA) manual
- The North Star Ambulatory Assessment (NSAA) worksheet
- The North Star Assessment for Dysferlinopathy (NSAD) manual
- The North Star Assessment for Dysferlinopathy (NSAD) worksheet
- Performance of the Upper Limb Module for Duchenne muscular dystrophy
- EK scale information and manual
- EK scale (version 2) worksheet
You can find out more information about the North Star network here.