PAEDIATRIC NORTH STAR
UK NATIONAL NEUROMUSCULAR DATABASE
The UK National Neuromuscular Database has been developed to facilitate research, audit and provide standardised clinical assessment of patients with neuromuscular disorders in the UK.
To lead and contribute to national and international initiatives in the field of neuromuscular conditions.
To lead and contribute to national and international initiatives in the field of neuromuscular conditions.
About the North Star Clinical Network
The North Star Project
The North Star 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). The overall aim is to optimise the care of young patients with Duchenne Muscular Dystrophy (DMD) by achieving and practising consensus on best clinical management, with agreed assessment and treatment protocols, irrespective of the treating clinical centre.
The project aims to:
The network consists of lead consultants, senior physiotherapists and other allied health professionals from paediatric tertiary centres across the UK. Currently the network includes 24 neuromuscular centres across the UK.
National Database for Duchenne Muscular Dystrophy
A national database was established in October 2006 by Professor Francesco Muntoni (Head of the Dubowitz Neuromuscular Centre, UCL, GOSH, ICH) and Dr Adnan Manzur (Consultant Paediatric Neurologist, Dubowitz Neuromuscular Centre, GOSH) to collect data from children with Duchenne Muscular Dystrophy followed in all the major paediatric neuromuscular centres in the UK. The database is hosted on a secure site and managed and developed by Certus Technology Associates. With consent from patients and families, data from collaborating centres are entered into the database.
Muscular Dystrophy UK and the MRC Centre for Neuromuscular Disease (CNMD) continue to support the development of The UK National Neuromuscular Database. Requests for data can be made via the Network Coordinator. All requests for data are managed by the network's Project Management Group.
The North Star 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). The overall aim is to optimise the care of young patients with Duchenne Muscular Dystrophy (DMD) by achieving and practising consensus on best clinical management, with agreed assessment and treatment protocols, irrespective of the treating clinical centre.
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
The network consists of lead consultants, senior physiotherapists and other allied health professionals from paediatric tertiary centres across the UK. Currently the network includes 24 neuromuscular centres across the UK.
National Database for Duchenne Muscular Dystrophy
A national database was established in October 2006 by Professor Francesco Muntoni (Head of the Dubowitz Neuromuscular Centre, UCL, GOSH, ICH) and Dr Adnan Manzur (Consultant Paediatric Neurologist, Dubowitz Neuromuscular Centre, GOSH) to collect data from children with Duchenne Muscular Dystrophy followed in all the major paediatric neuromuscular centres in the UK. The database is hosted on a secure site and managed and developed by Certus Technology Associates. With consent from patients and families, data from collaborating centres are entered into the database.
Muscular Dystrophy UK and the MRC Centre for Neuromuscular Disease (CNMD) continue to support the development of The UK National Neuromuscular Database. Requests for data can be made via the Network Coordinator. All requests for data are managed by the network's Project Management Group.
COVID-19 information from the Great Ormond Street Neuromuscular Team
Many families are contacting us to request information on how they should interpret the recent governmental guideline on vulnerable populations, especially when it comes to attendance to school.
The GOSH neuromuscular clinical team consensus is that the following patients should follow social distancing, including no school/college/social gatherings. https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults)
1) children on oral steroids (example DMD) and Myasthenia gravis
2) Children at respiratory risk (ventilated, respiratory function (FVC) <60%, Congenital myasthenic syndromes, advised influenza vaccine)
Many families have asked what they should also do with their additional healthy siblings. At the moment this is a parental choice, until further DOH guidance.
The Great Ormond Street Neuromuscular Team.
Many families are contacting us to request information on how they should interpret the recent governmental guideline on vulnerable populations, especially when it comes to attendance to school.
The GOSH neuromuscular clinical team consensus is that the following patients should follow social distancing, including no school/college/social gatherings. https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults)
1) children on oral steroids (example DMD) and Myasthenia gravis
2) Children at respiratory risk (ventilated, respiratory function (FVC) <60%, Congenital myasthenic syndromes, advised influenza vaccine)
Many families have asked what they should also do with their additional healthy siblings. At the moment this is a parental choice, until further DOH guidance.
The Great Ormond Street Neuromuscular Team.
