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 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. Mike Hanna |
| Myotonic dystrophy | Dr. Chris Turner |
he 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.