The UK National Neuromuscular Database
The UK National Neuromuscular Database has been developed to facilitate research, audit and standardised clinical assessment of patients with neuromuscular disorders in the UK and to lead and contribute to national and international initiatives in the field of neuromuscular conditions.
The Muscular Dystrophy Campaign and the MRC Centre for Neuromuscular Disease (CNMD) support its current development.
The database was originally set up by Professor Francesco Muntoni (Head of the Dubowitz Neuromuscular Centre, ICH, UCL) and Dr Adnan Manzur (Dubowitz Neuromuscular Centre, ICH, UCL) to collect data from children with Duchenne muscular dystrophy (DMD) and Spinal Muscular Atrophy (SMA) followed in all the major paediatric neuromuscular centres, with the support of the Muscular Dystrophy Campaign.
More recent developments include the conditions Inclusion Body Myositis (IBM), the Congenital Muscular Dystrophies and Congenital Myopathies and non ambulant paediatric and transition phases of DMD are well under way.
The database is web-based, hosted on a secure site and managed and developed by Certus Technology Associates. Data are entered onto the database from collaborating centres and with consent from patients and families.
Requests for data are managed by a governance committee. An authorship policy has been agreed and is in place. Requests for data can be made via Elaine Scott, project coordinator - northstar@muscular-dystrophy.org
Clinical networks
Ensuring best care for those living with muscle disease through audit, review and standardisation of clinical processes.
The NorthStar Project for Duchenne muscular dystrophy
The NorthStar Project 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).
Download the NorthStar ambulatory assessment form.
The project aims to:
- Provide best support to patients - by agreeing protocols for assessment and best practice treatment options.
- Assist clinicians working with muscle disease - by developing a national clinical network and providing a discussion forum to promote best patient care.
- Standardise and optimise steroid therapy- in ambulant children with DMD throughout the UK.
- Ensure a standard assessment protocol- for newly diagnosed children and those due to start corticosteroid treatment.
Key developments of the project so far are launches of:
- A national NorthStar Database in October 2006- to gather information on disease actvity in a large group of patients with DMD.
- A UK wide NorthStar Clinical Network- which includes 21 consultants, 17 Physiotherapists and allied health professionals from many specialist paediatric neuromuscular centres.
Following a lengthy process of consensus and review, the project has also produced:
- A Statement on the role of glucocorticoid corticosteroids in Duchenne muscular dystrophy.
- A nationally standardised NorthStar Assessment Protocol- for long-term monitoring of ambulant patients with Duchenne muscular dystrophy. Medical and physiotherapy assessment systems have been produced. Tests include assessment of functional abilities, muscle strength and pulmonary function.
The North Star Clinical Network consists of specialist paediatric neuromuscular centres from across the UK:
- Clinical Lead: Dr A Manzur, Dubowitz Neuromuscular Centre, Great Ormond Street Hospital, London, UK.
- Academic Lead: Professor F Muntoni, Dubowitz Neuromuscular Centre, Great Ormond Street Hospital, London, UK.
- Project coordinator: Elaine Scott, Muscular Dystrophy Campaign, London UK.
Download a list of collaborating centres
Professionals seeking further information - regarding the NorthStar project or details of the full assessment protocol please contact Elaine Scott, NorthStar Project Coordinator at northstar@muscular-dystrophy.org.
The SMArtNet project for spinal muscular atrophy
The SMArtNet clinical database is jointly funded by the Muscular Dystrophy Campaign and Jennifer Trust for Spinal Muscular Atrophy and was launched in the spring of 2009. The project aims to drive improvements in services and set national standards of care for children and adults with spinal muscular atrophy.
Further information on Smartnet.
Professionals seeking further information regarding the SMArtNet project please contact Elaine Scott, NorthStar Project Coordinator at northstar@muscular-dystrophy.org or Dr Adnan Manzur at Great Ormond Street Hospital - ManzuA@gosh.nhs.uk
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