You’ll often hear people talk about the Duchenne Standards of Care. This document was written by leading clinicians from around the world and sets out the care that people living with the condition should receive.
The standards of care is a technical document, so Treat-NMD has released a families guide that is available for download. This gives an overview of different areas of care including bone health, heart drugs and respiratory care, among many others.
Standards of care videos
Each video covers one sections of the standards of care, with useful advice, information. If you have any questions, please let us know and we’ll try to answer them in future videos.
To help you navigate these areas of care, we have worked with experts to create these easy to follow videos.
Nutrition & Swallowing
Jodi Allen talks about nutrition and swallowing in Duchenne muscular dystrophy.
Read moreBone health & endocrine management
Dr. Jarod Wong explains Bone Health and Endocrine Management in Duchenne muscular dystrophy.
Read moreGenetic diagnosis
Dr. Annemieke Aartsma-Rus explains the importance of a genetic diagnosis of Duchenne muscular dystrophy.
Read moreTransition
Dr Michela Guglieri talks through transition stages for people living with Duchenne muscular dystrophy.
Read moreSteroid Management
Dr Michela Guglieri talks through steroid management for people living with Duchenne muscular dystrophy.
Read morePassive & passive assisted physiotherapy
Marina Di Marco shares the videos she uses to help support her training for carers and family members who help young people and adults with their movements.
Read morePaediatric physiotherapy series
Marion Main, Senior Physiotherapist at GOSH presented 6 sessions during COVID-19 lock-down.
Read morePsychosocial
Dr Sadie Thomas-Unsworth helps many families deal with the psychological effects of living with Duchenne.
Read moreAdult Duchenne Care Standards
The first ever Consensus guideline for Standards of Care for adults living with Duchenne has been published in the Journal of Neuromuscular Disorders. The Standards of Care were developed by the Adult North Star Network, funded and co-ordinated by Muscular Dystrophy UK (MDUK).
- These guidelines were produced to compliment not replace the International Standards of Care.
- The International Standards of Care focuses on Paediatric whereas Adult service is more complex.
- There is an emphasis on self management and shared decision making.
- Emphasis shifts from prevention of complications to treatment of complications.
New Adult Duchenne Muscular Dystrophy Therapist Care Guidelines
Adult North Star Network (ANSN): Consensus Document for Therapists Working with Adults with Duchenne Muscular Dystrophy Therapy Guidelines.
These guidelines outline the multidisciplinary therapy care adults with Duchenne muscular dystrophy require, with the aim to support therapists, with little or no experience, in managing these complex care needs.
