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The National Institute for Health and Care Excellence (NICE) has published its first assessment of an externally produced clinical guideline.
On 5 September 2025, NICE said that it had reviewed — and approved — a guideline produced by DMD Care UK on cardiac care of children with Duchenne muscular dystrophy (DMD), as well as the screening and management of females carrying the genetic mutation that causes the condition.
“We’ve reviewed the process and methods used to produce the guideline, have checked for overlap with existing NICE guidance, and think the guideline from DMD Care UK is a useful resource,” it said.
“NICE-reviewed guidelines are part of our broader initiative to provide useful and useable guidance in an efficient, timely and sustainable manner on topics we may not be able to cover ourselves.”
The DMD Care UK’s cardiac care guideline is one of a series it is producing to address variation in care across the UK for people living with DMD.
NICE added it would be reviewing the series of guidelines, with respiratory care due to go through the process next.
In addition to its technology appraisal guidance — which makes recommendations on the use of new and existing medicines and other treatments within the NHS — NICE publishes its own clinical guidelines based on the best available evidence, with input from people using services, carers and the public.
Jonathan Benger, chief medical officer and deputy chief executive of NICE, commented: “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.”
DMD is a severe, progressive muscle-wasting genetic condition, which affects around 2,500 people in the UK.
The condition is caused by lack of the protein dystrophin, which is essential for muscle function. Symptoms typically appear at the age of around three years, with most children needing to use a wheelchair by early adolescence and eventually requiring artificial ventilation to help them breathe.
Alex Johnson, co-founder of charity Duchenne UK, said: “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.”
