The myotonic dystrophy dataset (DM) was published in August 2009. This is the first DM1 dataset TREAT-NMD has developed and published. The dataset is officially titled “Core dataset for international DM1 registry”.
Mandatory data items within the core dataset are essential components that registries must include in their data collection forms. This ensures the capability to store and provide the data, regardless of its availability for all individuals. While this represents a minimum core dataset, registries have the flexibility to collect additional items that align with their local interests or relevance.
If you have further questions about the DM dataset or any questions regarding the implementation, please contact the registries team.