NorthStar (DMD)

Background

Duchenne muscular dystrophy (DMD) is a neuromuscular condition characterised by progressive muscle weakness. DMD is rare, so more clinical information is needed to improve its treatment.

Study information

The NorthStar project was set up to improve standards of care for boys and young men with DMD. A major achievement of the project has been the development of the Northstar clinical network.

The network consists of health professionals based at specialist neuromuscular centres across the UK. Its members have worked together to produce standard guidelines on the use of steroids in DMD.

Also, for ambulant DMD children, a standardised physiotherapy assessment protocol has been developed. It is called the 'NorthStar assessment' and includes tests of:

• functional abilities
• muscle strength
• pulmonary function

In 2006, a national NorthStar database was set up. It collects clinical information from participating DMD clinics.

This information will assist clinical decision-making and help the process of audit and review. The latter is necessary to ensure optimal treatment and management.

Requests for access to anonymised data can be made.