Intrepid polar adventurers Michael McGrath and Chris Cope met at the recent launch of the NorthStar Clinical Database hosted by the Muscular Dystrophy Campaign held at the Dana Centre, Science Museum in London on Thursday 12th October 2006.
Michael who has Limb Girdle Muscular Dystrophy, joined Chris at the end of his expedition to the North Pole back in April 2002
Objectives of the NorthStar Project
To set up a UK wide clinical network of participating paediatric neuromuscular centres, optimizing patient care by achieving and practicing consensus on best management
To develop a nationally agreed, standardized assessment protocol to monitor the disease in patients with Duchenne muscular dystrophy (DMD)
To develop a national database of information from these parameters of disease activity in a large cohort of patients with DMD, in order to facilitate clinical audit and review of practice
The initial focus is on optimizing and standardizing steroid therapy in ambulant children with DMD throughout the UK. To this end newly diagnosed children and those due to start glucocorticoid corticosteroid treatment will be assessed using the North Star protocol, and recruited to the national database
There is the possibility of facilitating research interventions in the longer term (with appropriate Research Ethics approval and finances)
For further information on the NorthStar Clinical Network for Paediatric Neuromuscular Disease Management, click here to download a .pdf information sheet
Muscle News update posted 31st October, 2006
The Muscular Dystrophy Campaign [MDC] is the only UK charity focusing on all muscular dystrophies and allied disorders. It has pioneered the search for treatments and cures for over 45 years and provides practical, medical and emotional support to people affected by the condition.
[Registered charity no. 205395]
Official Website: http://www.muscular-dystrophy.org/