The NorthStar Project

The NorthStar Project aims to optimise the care of young patients with Duchenne muscular dystrophy by achieving and practicing consensus on best clinical management, with agreed assessment and treatment protocols, no matter which clinical centre they attend.

The clinical leader for the project is Dr Adnan Manzur, Consultant Paediatric Neurologist at the Dubowitz Neuromuscular Centre at Great Ormond Street Hospital (GOSH).

Project activity can be split into the three key areas below:

The network consists of consultants, physiotherapists and other allied health professionals at 23 specialist paediatric tertiary centres across the UK. Membership includes over 200 consultants, physiotherapists and other allied health professionals. Over 2000 children with Duchenne muscular dystrophy have been treated at these centres since the initiation of the network.

A standardised physiotherapy assessment protocol has been developed for ambulant children with Duchenne muscular dystrophy via a lengthy process of consensus and review. Tests include assessment of functional abilities, muscle strength and pulmonary function.

Information from the clinical assessment protocols from participating centres is, with parental consent, entered into the NorthStar database. Collating information from many centres about the condition gives a larger body of information to assist clinical decision-making and service development.

The database was established in autumn 2006 and will therefore facilitate the process of audit and review, which is necessary to ensure optimal treatment and management.

Requests for access to anonymised, summary data from NorthStar patients can be made by email to northstar.network@ucl.ac.uk.

Professionals seeking further information regarding the project can email Dr Adnan Manzur at: Adnan.Manzur@gosh.nhs.uk

For other general enquiries, please contact the project via email at: northstar.network@ucl.ac.uk.

The NorthStar project is supported and substantially funded by Muscular Dystrophy UK.