The United Kingdom National Registry for Myotonic Dystrophy

First published 01/02/2024

Last updated 17/10/2024

Data source

Human

Disease registry

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Record completeness

Administrative details

Data source ID: 37234

Name of data source: The United Kingdom National Registry for Myotonic Dystrophy

Data source acronym: UK DM Patient Registry

Data holder: John Walton Muscular Dystrophy Research Centre, Newcastle University

Data source type: Disease registry

Main financial support: Funds from patients organisations, charity and foundations

Care setting: Hospital outpatient care

Other

Data source qualification If the data source has successfully undergone a formal qualification process (e.g., from the EMA, ISO or other certifications), this should be described.: No

Data source website: https://www.dm-registry.org.uk/

Contact details

Chiara Marini-Bettolo myotonicdystrophyregistry@newcastle.ac.uk

Main

myotonicdystrophyregistry@newcastle.ac.uk

Helen Walker myotonicdystrophyregistry@newcastle.ac.uk

Alternate

myotonicdystrophyregistry@newcastle.ac.uk

Data source regions and languages

Data source countries: Ireland

United Kingdom

Data source languages: English

Data source establishment

Data source established: 29/03/2012

Data source time span: First collection: 29/03/2012
The date when data started to be collected or extracted.

Publications

Data source publications