Care recommendations for congenital myotonic dystrophy and myotonic dystrophy type 2 published

Published Date
03/05/2019
Author
Jenny Sharpe
Category
Research

The first set of care recommendations for congenital and childhood-onset myotonic dystrophy type 1, and myotonic dystrophy type 2 have been published. These will help clinicians around the world to deliver consistently high standards of care.

To develop the recommendations, 11 international clinicians experienced in the care of infants and children with congenital and childhood-onset myotonic dystrophy type 1, and 15 international clinicians experienced in the care of adults with myotonic dystrophy type 2, worked collaboratively for over a year. They developed a consensus regarding care strategies for over 20 different body systems.

The work was organised and supported by the Myotonic Dystrophy Foundation (MDF) in the USA. It is hoped that these recommendations will inform clinicians who may not be familiar with condition, therefore improving care and quality of life for affected families. In addition, removing inconsistences in patient care will improve our understanding of the condition and how it progresses. This is important for drug development and clinical trials.

The consensus-based care recommendations for adults with myotonic dystrophy type 1 were published in November last year. You can access all the recommendations at the links below.

Congenital and childhood-onset myotonic dystrophy type 1

Adults with myotonic dystrophy type 2

Adults with myotonic dystrophy type 1

Whilst these care recommendations will be helpful to people with myotonic dystrophy worldwide, it’s important to remember that they may need to be adapted for UK practice. We’re currently seeking ways to get these recommendations recognised and implemented in the UK.

Further information and support

Find out about the Congenital Myotonic Dystrophy Fight Fund

Read about MDUK-funded research into myotonic dystrophy

Get in touch with the MDUK Research Line

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