Through the collaborative initiative SMA Care UK, this partnership will develop updated, evidence-based Standards of Care (SoC), building on the 2017 international guidelines. These new standards will reflect the evolving needs of the SMA community and take into account the transformative impact of disease-modifying treatments on disease progression and management.
In addition to updating care recommendations, the project will identify key gaps in knowledge and explore strategies for gathering the evidence needed to address them. The ultimate goal is to ensure the consistent delivery of high-quality, evidence-based care across the UK, while also contributing to internationally relevant resources that support global best practice.
Left to right: Giles Lomax, SMA UK CEO; Professor Chiara Marini-Bettolo, Consultant Neurologist and Honorary Clinical Senior Lecturer and co-lead of SMA Care UK; Vanessa Christie-Brown, SMA Care UK Project Manager; Grecia Benesperi, SMA Care UK Project Assistant.
Professor Volker Straub, Harold Macmillan Professor of Medicine and Director of the John Walton Muscular Dystrophy Research Centre at Newcastle University, said:
“At the John Walton Muscular Dystrophy Research Centre, we are delighted to support this new collaboration agreement between SMA UK and Newcastle University. This partnership represents an important step forward, and we are enthusiastic about what it means for the future of the SMA Care UK project. Ultimately, our shared goal is to improve outcomes for individuals and families living with SMA, and we’re proud to be part of an initiative that puts patients first.”
Professor Chiara Marini-Bettolo, Consultant Neurologist and Honorary Clinical Senior Lecturer and co-lead of SMA Care UK, said:
“This is a great opportunity to improve care standards and equitable access to care for people living with SMA across all ages in the UK. I am excited to take this forward.”
Giles Lomax, Chief Executive, Spinal Muscular Atrophy UK said:
“We are delighted to formally partner with Newcastle University and the John Walton Muscular Dystrophy Research Centre on the SMA Care UK project. As a member of the Russell Group, Newcastle brings a world-class reputation for research excellence across medicine, science and engineering, social sciences and the humanities. Their expertise, combined with our deep understanding of the lived experience of SMA, makes this a powerful collaboration to drive forward meaningful improvements in care for the SMA community.”
About Newcastle University
Newcastle University, UK, is a thriving international community of more than 28,000 students from over 130 countries worldwide. As a member of the Russell Group of research-intensive universities in the UK, Newcastle has a world-class reputation for research excellence in the fields of medicine, science and engineering, social sciences and the humanities.
Its academics are sharply focused on responding to the major challenges facing society today. Research and teaching are world-leading in areas as diverse as health, culture, technology and the environment. Newcastle is committed to providing students with excellent, research-led teaching delivered by dedicated and passionate teachers.
