Creation of the DMD care standards document
About the full academic consensus publication
A major international consensus document setting out best practice in care for Duchenne muscular dystrophy (DMD) was published in the Lancet Neurology journal in January and February 2010. The product of an extensive review process by 84 international experts in DMD diagnosis and care, this document is a unique guide to expert recommendations on the care that all individuals with DMD should receive.
The drafting of these guidelines was led by the US Centers for Disease Control (CDC) using a rigorous review process (known as the RAND/UCLA Appropriateness Method or RAM) that required experts to rate interventions and assessments used in the management of DMD for “appropriateness” or “necessity” at different stages of the condition. In total the expert panels considered more than 70 thousand different clinical scenarios.
In close collaboration with patient advocacy groups worldwide, the full academic publication has also been transformed into a comprehensive “family guide”. Patients and advocacy groups interested in receiving copies of the family guide or translating it into their own language should contact TREAT-NMD.
The National Institute for Health and Clinical Excellence (NICE) in the UK has officially endorsed the development process underpinning the DMD Standards of Care, which set out international consensus guidelines for the care for patients with Duchenne muscular dystrophy.
The recognition of the Care Standards as ‘Accredited Evidence‘ by NICE marks the culmination of a process led by the Muscular Dystrophy Campaign and Professor Kate Bushby, which certifies the clarity and rigour of development of the guidelines.
This recognition, the first for a neuromuscular condition, is a very important step in improving access to high quality care for DMD. It enables health care providers to have confidence that the guidelines were developed impartially and to a high standard. The Muscular Dystrophy Campaign is now looking into the possibility of gaining accredited evidence status for the Consensus statement for the care of spinal muscular atrophy.