Care recommendations for myotonic dystrophy type 1 published

Published Date
Sofia Nnorom

An international team of experts have published consensus-based care recommendations to help clinicians deliver consistently high standards of care to adults with myotonic dystrophy type 1.

These care recommendations were developed as there were no international care guidelines for the condition. As a result, the myotonic dystrophy community has raised concerns about individuals not getting the same standard of care.

To address this, 66 myotonic dystrophy clinical experts from across the world – including the UK – worked together for over a year to develop consensus-based care recommendations. It is hoped that these will inform clinicians who may not be familiar with condition and help standardise and improve care for adults with myotonic dystrophy type 1. 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 trial design.

The care recommendations include guidance for clinicians on a wide range of areas including:

  • Respiratory symptoms
  • Cardiovascular symptoms
  • Skeletal muscle weakness and rehabilitation
  • Gastrointestinal
  • Neuropsychiatric symptoms
  • Psychosocial symptoms
  • Endocrine and metabolic symptoms

This work was organised and supported by the Myotonic Dystrophy Foundation in the USA, who have also developed a quick reference guide for the care recommendations.

Whilst these care recommendations will be of benefit to people with myotonic dystrophy type 1 worldwide, it’s important to remember that they may need to be adapted for UK practice. Muscular Dystrophy UK is now working to ensure these recommendations are recognised and implemented by the NHS in the following ways:

Regional and national neuromuscular networks:

We will highlight and promote these care recommendations with all neuromuscular clinical networks across the UK at the next round of meetings in 2018/19. We will make clinical teams and NHS commissioners aware so that people with myotonic dystrophy type 1 receive the highest standards of care.

Centres of Excellence Audit:

As part of our Services Development Committee’s 2018 audit of neuromuscular centres we are checking that centres can deliver best levels of care for people with all neuromuscular conditions. The Committee is chaired by Baroness Celia Thomas and the triennial audit of centres is an excellent opportunity to reveal the standards of care provided in NHS neuromuscular services across the UK.

Mental Health Matters:

As part of our new strategy we will be driving forward work to improve access to dedicated psychology support for people with myotonic dystrophy and other neuromuscular conditions.

Family friendly version:

We will work with the Myotonic Dystrophy Foundation to develop a family friendly version of the guidelines.

Consensus-based care recommendations for individuals with congenital myotonic dystrophy or myotonic dystrophy type 2  have also been developed by the Myotonic Dystrophy Foundation and will be published soon.

If you have any questions about this news story or any other myotonic dystrophy research, please contact the MDUK Research Line on 020 7803 4813 or email

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