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TREAT-NMD

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Advancing diagnosis, care and treatment for people with neuromuscular diseases around the world

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DM dataset

Home / What We Do / Core Datasets / DM dataset

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.

Current Dataset

The DM1 core dataset has:
30 unique data items
12 mandatory CR items
12 mandatory PR items

The DM1 core dataset can be found here: DM1 Core Dataset 

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If you have further questions about the DM dataset or any questions regarding the implementation, please contact the registries team.

Registry Team Members

Neil Bennett

Neil Bennett

Global Registries Manager

Neil is an experienced science communicator; in the neuromuscular disease area, he has worked at Act...

Annie Poll

Annie Poll

Research Communications Lead, TREAT-NMD

Annie trained in several academic research laboratories at Newcastle University before taking on pos...

Farjana Ali

Farjana Ali

Datasets and Global Registries Platform Coordinator

Samantha Barker

Samantha Barker

Registry Network Administrator

Samantha (or Sammy) joined TREAT-NMD in July 2023. She has a background in administration and scienc...

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