DMD Care UK

Access to best care for everyone with Duchenne
The Duchenne Research Fund has partnered with Duchenne UK and Joining Jack to fund the DMD Care UK initiative, which aims to ensure everyone living with Duchenne in the UK has access to the best care.

Our three charities will invest £130,000 into the project, which was launched in October 2020 by Duchenne UK and Joining Jack together with Dr Michela Guglieri and Cathy Turner from Newcastle University. Leading Duchenne muscular dystrophy experts in the UK are working in collaboration with the Duchenne community to review current Standards of Care (published in the Lancet in 2018), and agree and publish recommendations for every area of care that can and should be delivered within the NHS.

Watch below to learn more.

Please note, the roundtable featured in this video took place before the pandemic.

Because Duchenne is a complex disease and covers many areas of medicine, DMD Care UK will break down the project into various working groups such as bone care, cardiac care, psychosocial care, and endocrine care, which covers puberty, adrenal suppression and steroids. As well as being a funding partner, we at Duchenne Research Fund will also participate in the working groups.

Once the recommendations have been agreed upon, leaflets and webinars will be created to make sure the community fully understands the recommendations. This initiative will work with the NorthStar Network, funded by MDUK, to make sure the recommendations are accessible to all patients, no matter where they live in the UK or what hospital they are seen at.

The working groups are:

Diagnosis; Cardiac, including female carrier screening; Respiratory; Bone; Endocrine/puberty; Steroid dosing and adrenal crisis management; Physiotherapy and rehabilitation; Orthopaedics and surgery; Emergency care; Nutrition and gastrointestinal management; Psychosocial care; Transition to adult care.

For more information, please visit dmdcareuk.org

Standards of Care

£40,000 contribution

Funded in 2021-23

Nationwide, UK

Why is the Duchenne Research Fund supporting this project?

Coping with the diagnosis of Duchenne muscular dystrophy is already hard for families and they should be reassured that in the UK they will receive the highest standards of care, wherever they live. The 2018 published care recommendations include guidance which we know are not followed everywhere in the country – it is important to reach a national agreement about the best medical thinking and ensure that this is delivered to each child, young adult and man with Duchenne.
Dr Michela Guglieri

Senior Clinical Lecturer, Honorary Consultant Neurologist at Newcastle University

This is such an important project. The Standards of Care that were published were mainly written with a view to the US health market. What we’ve done is to look at what the NHS is realistically able to deliver and make sure that this is available equally throughout the UK. We’ll look at all aspects of Duchenne care. Where we need more evidence, we will carry out research. Where we need to raise awareness, we will support education and training.
Cathy Turner

DMD Care UK Project Manager

The International DMD Care Considerations 2018 published in the Lancet Neurology can be found here: Part 1Part 2Part 3

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