Improving care for adults with Duchenne: Adult NorthStar Network update

Published Date
09/11/2018
Author
David Stephenson
Category
Strengthening healthcare services
Adult Nort Star

In October, Muscular Dystrophy UK organised the latest meeting of the Adult North Star Network in London.

The purpose of the network is to build up a picture of the progression of Duchenne muscular dystrophy (DMD) in adults living with this condition. This work aims to improve care and support as well as to gather knowledge and data to support future research trials. To achieve this the network is working to create the first natural history database for adults living with DMD to better track how their condition is progressing and the effect of treatments. Adults with DMD will have regular physiotherapy assessments and data will then be added to the NorthStar database. The network is also developing the first ever care recommendations for adults with DMD.

At the recent meeting, specialist health professionals from the John Walton Muscular Dystrophy Research Centre in Newcastle gave an overview of the training and management requirements of adding data to the NorthStar database. Health professionals then reviewed the forms that will be used by physiotherapists to add information to NorthStar.

There was also an opportunity to hear from Dr Richard Keen, a Consultant in Metabolic Bone Diseases at the Royal National Orthopaedic Hospital NHS Trust, on improving bone protection for people with DMD who are receiving steroid treatment.

Professor Derek Willis, from Severn Hospice in the West Midlands, led a discussion on palliative care for adults with DMD. He called for palliative care teams to build better links with neuromuscular services and to play a greater role in providing support with symptom control and pain management earlier on in a patient’s life. Professor Willis also highlighted that a lack of understanding of the support that palliative care services provide can result in people being unwilling to seek help, therefore missing out on valuable support.

Bobby Ancil, Senior Neuromuscular Outreach Manager, said:

Our Paediatric North Star database led to major breakthroughs such as the use of steroids in children with DMD. And I am delighted that our Adult NorthStar Network is now leading the way in improving care for adults with the same condition. It’s really exciting to be working with specialist health professionals across the UK to help identify the effectiveness of new treatments and drive up standards of care.

Next steps

  • We will be working with health professionals to make the final changes to the forms that will be used by physiotherapists to add data to NorthStar
  • The remaining NHS Trusts will be securing Caldicott Guardian approval which will enable them to start adding data to NorthStar
  • The plan is for Trusts to start adding data to NorthStar in Spring 2019.

If you would like to find out more about the NorthStar Network and support for health professionals working with people with DMD please contact David Stephenson at d.stephenson@muscularystrophyuk.org or on 0207 803 4826.

If you would like to speak to someone about DMD please call us on 0800 652 6352 or email info@musculardystrophyuk.org

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