Third Duchenne Care UK recommendation reviewed by NICE

The National Institute for Health and Care Excellence (NICE) has reviewed Duchenne Care UK’s published recommendations on orthopaedic care for people with Duchenne muscular dystrophy, recognising it as a guideline developed using appropriate processes and methods to support improved care and outcomes for people with Duchenne.

The orthopaedic recommendations were developed to help ensure that people with Duchenne receive consistent, high-quality orthopaedic care across the UK. They cover key areas including fracture management and elective orthopaedic procedures, reflecting the specific needs of people with Duchenne. This work was developed by a multidisciplinary expert working group chaired by orthopaedic surgeon Mr Philip Henman at Newcastle, and endorsed by the British Society for Children’s Orthopaedic Surgery (BSCOS). The paper appeared in the Journal of Children’s Orthopaedics and is accompanied by a Duchenne Care UK Guide for Families.

Further to the full recommendation, the project has produced a one-page “orthopaedic imperatives” document as part of a series hosted by BSCOS. This will help inform healthcare professionals about appropriate care in emergency or unplanned situations and can be found here.

Strengths of the guidelines highlighted
In its review, NICE highlighted several strengths of the recommendation, including the involvement of clinical experts and patient representatives throughout its development, the clear description of the target population and objectives, and the strong engagement of stakeholders across the Duchenne community. NICE also noted that the recommendations were reviewed by clinical experts across the UK, providing confidence in their acceptability and relevance for services and patients. This marks an important milestone for Duchenne Care UK and is the third of its clinical recommendation documents to be reviewed by NICE, following cardiac and respiratory care. These reviews reflect the growing recognition of Duchenne Care UK’s work to establish clear, UK-specific standards of care for people living with Duchenne muscular dystrophy.

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

Welcoming thereview, Alex Johnson OBE, Co-founder of Duchenne UK and Founder and ChiefExecutive of Joining Jack, said:

“We are delighted that NICE has reviewed our orthopaedic care recommendations and recognised the robust and collaborative approach taken in their development. For families affected by Duchenne, access to consistent, high-quality care can make a significant difference to both quality of life and long-term outcomes. This review is further recognition of the vital work being led by Duchenne Care UK and the commitment of clinicians, researchers, patients and families working together to raise standards of care across the UK.”

Professor Michela Guglieri, Clinical Lead for Duchenne Care UK, said:

“To achieve recognition from NICE for this work is so important in raising awareness and improving clinical care for everyone living with Duchenne. Publication, professional endorsement and NICE review of the care recommendations reflects many months of commitment from Duchenne Care UK’s working groups as well as the clinicians and patient representatives who review and input into their development. We will continue to work together to improve care.”

You can download the clinical recommendations here.
‍
You can download the Family Guide for orthopaedic care in Duchenne here.

‍