NICE recognises DMD Care UK’s clinical guidelines for cardiac care

Joining Jack is proud to announce on World Duchenne Awareness Day, Sunday, 7th September, 2025, that the National Institute for Health and Care Excellence (NICE) has reviewed DMD Care UK’s cardiac care guidelines which now feature on the NICE website. NICE’s review of DMD Care UK’s cardiac guidelines found them to be “a useful resource that will help clinicians improve care in this area”.

This new process is called ‘curation’ and NICE is collaborating with DMD Care UK to curate all DMD Care UK guidelines, with respiratory care due to go through this process next.

This is an important milestone in the standardisation and improvement of care for everyone living with Duchenne muscular dystrophy (DMD) across the UK.

DMD Care UK – raising standards of care

DMD Care UK is a collaborative initiative between the John Walton Muscular Dystrophy Research Centre at Newcastle University and Duchenne UK, embedded in the UK North Star Network. It is funded by Duchenne UK, Duchenne Research Fund and Joining Jack.

Set up in 2020, DMD Care UK is a nationwide programme to ensure every person living with DMD in the UK has access to the best care, no matter where they live.

Clinical guidelines

DMD Care UK brings together expert clinicians, professional bodies and the patient community to agree, communicate and implement DMD standards of care recommendations for the UK.

Each guideline is developed and agreed by its own working group of specialists in that area and patient representatives after wide consultation across UK specialist care centres in the North Star network of neuromuscular specialists. You can find more detail about the methodology used here.

All recommendations have been based on the International Standards published in 2018 in Lancet Neurology, but are more specific, practical and relevant for the UK healthcare system. Working closely with relevant professional bodies, each guideline is endorsed and, where appropriate, published in peer reviewed journals.

Guidelines for clinical care published so far include cardiac, orthopaedic, corticosteroids, bone and endocrine, physiotherapy, and respiratory care for people with DMD. These can be found here. Accessible versions of the recommendations are produced for patients and families and can be viewed or downloaded here.

Importance of NICE curation

NICE was established to provide national guidance and advice to improve health and social care in England and reduce variations in treatment by appraising new technologies, developing guidelines, and setting standards for commissioners and practitioners. NICE curation recognises the quality of the guideline development process and the importance of consistent, high-quality care for people living with this complex and progressive condition. It adds weight to the guidelines and means that healthcare professionals and NHS providers will be encouraged to adopt and implement them across the UK, helping to reduce variation in care and improve outcomes.

Alex Johnson, Co-founder of Joining Jack, said:

“This is a big step forward in the work of DMD Care UK. Having a set of clinical guidelines that reflect the best cardiac care for people living with DMD, that are now nationally recognised in this way, will help us continue to empower patients and raise standards of care for everyone living with DMD, no matter where they live.

“We are deeply grateful to all the families, clinicians and partners who made this possible, and to NICE for recognising the importance of these standards.”

Professor Jonathan Benger, NICE Chief Medical Officer and Deputy Chief Executive said:

“Guideline collaboration is a new programme within NICE designed to provide useful and useable guidance in an efficient and sustainable manner. As well as supporting working at pace, to get the best care to people quickly, it also enables us to share good practice, reduce and remove duplication, and avoid mixed messages through misaligned or conflicting guidance. Collaborating with key partners such as DMD Care UK will also help support implementation.”

Joining Jack together with the John Walton Muscular Dystrophy Research Centre at Newcastle, will continue working closely with NHS providers, professional bodies, and the wider DMD community to support the implementation of the guidelines and ensure they lead to meaningful improvements in care.

For more information on the guidelines and the DMD Care UK project, visit: dmdcareuk.org.