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