Work underway on new guidelines for the care and treatment of adults with Duchenne muscular dystrophy

Published Date
04/03/2016
Author
Alexa Follen
Category
Campaigns

Neuromuscular specialists supporting adults with Duchenne muscular dystrophy from across the UK came together this week to take the first steps in the creation of new standards of care for adults living with Duchenne.

The North Star Adult Network, which is made up of neuromuscular expert consultants, physiotherapists and other allied health professionals, and  Muscular Dystrophy UK, will work together to improve the standards of care and support available to adults across the UK. By improving the expected standards of care and support that is available, the group hope to increase the life expectancy and quality of life of men living with Duchenne muscular dystrophy.

The Network, which was launched last year, will aim to mirror and add to the activity of the ongoing paediatric North Star Project, which works to optimise the care of children with Duchenne muscular dystrophy. The project achieves this by gaining consensus on the best clinical management, assessment and treatment protocols, no matter which clinical centre a person attends. It is hoped that by collating information from many centres about the condition in adults there will be a larger body of information to assist clinical decision-making and service development.

The development of the proposed new standards of care, and the plan to develop a database of information on Duchenne muscular dystrophy in adults will be a major driving force towards the future potential for clinical trials for young men with the condition.

Dr Ros Quinlivan, a consultant at the Centre for Neuromuscular Diseases at the National Hospital for Neurology and Neurosurgery and who chaired the Network meeting said:

It was pleasing to see representatives from so many of the neuromuscular centres caring for people with Duchenne muscular dystrophy at the latest Adult North Star Network meeting. It is so valuable to be able to bring together specialists in the care of adults with Duchenne from across the UK and to hear how are services are similar and also differ in the ways we deliver care for our patients. We will all be working hard over the coming months to create new these new care guidelines that will drive forward the care for adults living with Duchenne muscular dystrophy.

Bobby Ancil, Muscular Dystrophy UK Neuromuscular Outreach Manager said:

This Adult North Star Network is already bringing together experts from the across the UK in the care of adults with Duchenne muscular dystrophy and other neuromuscular conditions. The group are sharing their expert knowledge and best practice in the treatment of adults with Duchenne and Muscular Dystrophy UK is pleased to be able to support in the development of  these proposed new care guidelines, which we hope will raise the bar in the care of adults with Duchenne.

For more information about the new North Star Adult Network email Bobby Ancil on b.ancil@musculardystrophyuk.org or call on 07920188970.

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