The TREAT-NMD DMD core dataset project started in 2007-2008 and a revised version of the dataset was published in 2013. The dataset was expanded in February 2021 for clinically reported registries and in May 2021 for patient reported registries; this is the current version of the dataset (version 1.2).
The dataset is for all registries collecting data on individuals with DMD (clinician-, patient-, or dual-reported registries) with different mandatory items for different registry types. The DMD dataset can also be used to collect data from people living with Becker muscular dystrophy.
Version 1.2 of the DMD dataset has:
- 112 unique data items
- 73 mandatory items for clinician-reported registries
- 48 mandatory items for patient-reported registries
- 16 defined categories
- Examples, data rules & tools
You can view Version 1.2 of the DMD core dataset on our web-based dataset specification tool.
Version 1 (2013) Dataset has:
- 23 Data Items
- 14 mandatory items
- 9 Highly Encouraged Items
- 4 broad categories
DMD 2013 can be found here: DMD Core Dataset May 2013
Version 1.0 of the TREAT-NMD DMD core dataset was published in 2013. The original DMD dataset was developed by expert consensus in 2007-2008 as part of the original TREAT-NMD FP6 EU project. This version of the DMD dataset was then revised in 2013 (as v1.0).
Version 1.2 of the dataset was published in 2021 after a 2-year process to reach consensus on the items collected. This dataset was published in February 2021 for clinician-reported registries and in May 2021 for patient-reported registries. The revised version was engineered to better inform on the natural history of DMD and provide data to support post-marketing surveillance (safety and effectiveness) for new treatments. The development of an expanded DMD dataset was the product of collaboration with Key Opinion Leaders, registry curators, regulators, and industry representatives. The draft dataset was reviewed by registries in a 4-month feasibility pilot, approved by the PI Michela Guglieri & TGDOC chairs. The dataset is also published in our Global Registries platform
If you have further questions about the DMD dataset or any questions regarding the implementation, please contact the registries team.
Registry Team Members
Neil Bennett
Global Registries Manager
Neil is an experienced science communicator; in the neuromuscular disease area, he has worked at Act...
Annie Poll
Research Communications Lead, TREAT-NMD
Annie trained in several academic research laboratories at Newcastle University before taking on pos...
Farjana Ali
Datasets and Global Registries Platform Coordinator
Samantha Barker
Registry Network Administrator
Samantha (or Sammy) joined TREAT-NMD in July 2023. She has a background in administration and scienc...