The North Star 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). The network curator is Isabelle Wilson (firstname.lastname@example.org)
Project activity can be split into the three key areas below:
The North Star clinical network
The network consists of lead consultants, senior physiotherapists and other allied health professionals from 23 specialist paediatric tertiary centres across the UK. Membership includes 34 consultants, 33 physiotherapists and other allied health professionals. Over 600 ambulant children with Duchenne muscular dystrophy are registered with these centres.
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.
National database for Duchenne muscular dystrophy
Information from the clinical assessment protocols from participating centres is, with parental consent, entered into the North Star 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 data can be made.