First NICE-curated guideline announced ahead of World Duchenne Awareness Day
In the lead-up to World Duchenne Awareness Day on Sunday 7 September, we’re pleased to announce the completion of our first assessment of an externally developed clinical guideline.
Duchenne Muscular Dystrophy (DMD) Care UK’s guideline on cardiac care of children with the condition, and the screening and management of girls carrying the genetic mutation that causes it, becomes the first NICE-reviewed (curated) guideline.
This means 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. Our website provides a link to the guideline and a commentary on its strengths and limitations.
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 they are producing to address variation in care across the UK for people living with DMD. We will review all these guidelines over the coming months, with respiratory care due to go through this process next.
DMD is a severe, progressive muscle-wasting genetic condition caused by the lack of a protein called dystrophin – a protein essential for muscle function. Symptoms typically appear at around age 3, with most children needing to use a wheelchair by early adolescence and eventually requiring artificial ventilation to help them breathe. Around 2500 people in the UK are affected by DMD.
Guideline collaboration is a new programme within NICE designed to provide useful and useable guidance in an efficient and sustainable manner.
Professor Benger continued: "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."
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.