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Clinical recommendations for Duchenne muscular dystrophy care

The clinical recommendations are evidence-based and consensus-based guidelines for Duchenne muscular dystrophy (DMD) patient care in the UK, agreed by each DMD Care UK working group. 


All recommendations have been based on the International DMD Care Considerations 2018 published in the Lancet Neurology: Part 1, Part 2 and Part 3 but are more specific and relevant for the UK healthcare system. 


We also offer accessible versions of the recommendations for patients and families . Please fill out this form to order printed copies for your care centre. 


You can also refer adult patients with DMD to  the national psychosocial care project for DMD. You can download the referral form here.

Request patient information resources

Bone and endocrine

These recommendations were drafted by the Bone and Endocrine working group of the DMD Care UK project. They have been agreed through consultation and input from North Star specialists from across the UK network, members of the British Paediatric and Adolescent Bone Group and have been endorsed by the British Society for Paediatric Endocrinology and Diabetes (BSPED).
This group will use and share these recommendations in future academic publications. 


This work is published under a Creative Commons Attribution-Noncommercial-NoDerivatives 4.0 International License http://creativecommons.org/licenses/by-nc-nd/4.0/

Bone and endocrine standards of care (pdf)Download

Clinical monitoring of bone and endocrine outcomes in individuals with DMD on vamorolone and switching from classic glucocorticoid to vamorolone.

Clinical monitoring guidelines (vamorolone) (pdf)Download

Cardiac care

These recommendations were drafted by the cardiology working group of the DMD Care UK project. They have been agreed through consultation and input from North Star specialists from across the UK network and DMD patient and caregiver representatives, and have been endorsed by the British Cardiovascular Society. The recommendations were published in the BMJ Open Heart in October 2022. 


Read the recommendations in the BMJ Open Heart or download a PDF copy below.


DMD cardiac standards of care (pdf)Download

Corticosteroids

 These guidelines refer to the use of corticosteroids (deflazacort, prednisolone and vamorolone) in people with Duchenne muscular dystrophy (DMD). While some of the information might also apply to rare females with DMD treated with corticosteroids, the lack of evidence in this population makes the development of any specific guidance very difficult. 


Final Corticosteroids Guidance (pdf)Download
Appendix A_Vamorolone key considerations (pdf)Download
Appendix B_side effect management_JAMA (pdf)Download
Appendix C_clinical letter to families at treatment initiation (docx)Download
Appendix D_clinical letter to GPs at treatment initiation (docx)Download
Endo & Bone Vamorolone Guidance (pdf)Download

Physiotherapy and occupational therapy

These guidelines have been developed by Dr Anna Mayhew, Consultant Physiotherapist at the John Walton Muscular Dystrophy Research Centre, Newcastle University, and DMD Care UK’s physiotherapy and occupational therapy working group. They have been endorsed by the paediatric and adult North Star Networks collectively. Many of the Network physiotherapists formed part of the Therapy Working Group and all paediatric North Star Network physiotherapists were provided with the opportunity to input the guidelines, and their content. These guidelines are also endorsed by the Neuromuscular Group of Association of Paediatric Chartered Physiotherapists.


DMD Care UK physiotherapy and occupational therapy guidelines (pdf)Download
Publications of guidelines in European Journal of Paediatric Neurology (pdf)Download

Respiratory care

These recommendations were drafted by the respiratory working group of the DMD Care UK project. They have been agreed through consultation and input from North Star specialists from across the UK network and DMD patient and caregiver representatives, and have been endorsed by the British Thoracic Society. The recommendations were published in the journal Thorax in December 2023. 


Read the guidelines in Thorax or download a PDF copy below

 

DMD Care UK respiratory guidelines (pdf)Download

Vamorolone for DMD: a summary of evidence so far

Prepared by Michela Guglieri and Cathy Turner, John Walton Muscular Dystrophy Research Centre, Newcastle University and Newcastle upon Tyne Hospitals Trust.

Reviewed and approved by members of the Corticosteroid Working Group and the Family Focus Group of DMD Care UK.

 

Vamorolone in DMD - summary of current evidence (pdf)Download

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