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Queen Square Centre for Neuromuscular Diseases

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UK national neuromuscular database for personalised medicine

The National Neuromuscular Database has been developed to promote research, audit and standardised clinical assessment of patients with neuromuscular disorders in the UK.

About the Project

Prof. Michael Hanna
Academic lead 
Dr. Adnan Manzur 
Clinical lead for overall project 

The MRC Centre for Neuromuscular Disease (CNMD) and Muscular Dystrophy UK support its current development.

Project leads

Project 
Academic and clinical leads
North Star (DMD)
Prof. Francesco Muntoni
Dr. Adnan Manzur
SMARTnet (spinal muscular atrophy)
Prof. Francesco Muntoni
Dr. Adnan Manzur
MD-CORE (congenital muscular dystrophy and myopathy)
Prof. Francesco Muntoni
Dr. Adnan Manzur
Dr. Heinz Jungbluth
Inclusion Body Myositis
Prof. Mike Hanna
Dr. Matt Parton
Muscle channelopathies
Prof. Mike Hanna
Inherited neuropathies
Prof. Mary Reilly
Mitochondrial diseases
Dr. Robert McFarland (NCL)
Prof. Doug Turnbull (NCL)
Prof. Mike Hanna
Myotonic dystrophy
Dr. Chris Turner
Prof. Hanns Lochmüller

The database is web-based, hosted on a secure site, and managed and developed by Certus Technology Associates. Data is entered onto the database from collaborating centres with consent from patients and families.

History

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).

Muscular Dystrophy UK and the Spinal Muscular Atrophy Support UK provided support. 

Recent Developments

More recent developments include the conditions Inclusion Body Myositis (IBM), the Congenital Muscular Dystrophies, Congenital Myopathies and non-ambulant paediatric and transition phases of DMD.

There are active links with national and international initiatives and advocacy groups, including TREAT-NMD Network of Excellence, Muscular Dystrophy UK, Action Duchenne, the Myotubular Trust, Spinal Muscular Atrophy Support UK and Cure CMD.

Requests for Data and Access

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 the following websites:

Collaboration with industry

Collaboration with industrial partners is regulated by a governance committee. A list of collaborating paediatric clinical centres is also available via the above websites.