TREAT-NMD have published datasets for 5 diseases: Duchenne muscular dystrophy (DMD), facioscapulohumeral muscular dystrophy (FSHD), myotonic dystrophy (DM), spinal muscular atrophy (SMA), and limb girdle muscular dystrophy (LGMD).
As part of becoming a core member of the TREAT-NMD Global Registry Network, registries agree to collect data using a harmonised, disease-specific dataset.
These datasets empower researchers, clinicians, and patient advocates to make significant strides in understanding and improving the lives of those affected by these neuromuscular disorders.
The datasets set out a minimum data requirement – with many registries choosing to collect additional data including items relating to the natural history of the disease or quality of life of the patient.
To further harmonise global data collection, the TREAT-NMD datasets are made publicly available. Other registries can use this information as they choose, and many registries outside our network collect a subset of a TREAT-NMD dataset, or utilise the TREAT-NMD data dictionary.
Disease-specific datasets are currently available for Duchenne muscular dystrophy (DMD), limb girdle muscular dystrophy (LGMD), spinal muscular atrophy (SMA), facioscapulohumeral muscular dystrophy (FSHD), and myotonic dystrophy (DM).
If you have further questions about any of the datasets or any questions regarding implementation of a dataset in your registry, please contact the registries team.