Networking & Collaborations

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The John Walton Muscular Dystrophy Research Centre team has a long tradition of working nationally and internationally to establish networks and collaborations with stakeholders from across the neuromuscular landscape.

Many of the networking team at the John Walton Muscular Dystrophy Research Centre work in collaborative projects. We have had great success in securing funding for such projects over the years and since 2007 have participated in a funded portfolio of projects totalling over £100 million putting us firmly at the centre of the neuromuscular and rare disease community.

We have active patient and public involvement programmes, which include interactions and close working relationships with NHS services as well as many different disease specific and umbrella patient organisations. The John Walton Muscular Dystrophy Research Centre is experienced in the set-up and coordination of neuromuscular patient registries. A number of these are run from the centre, collecting data on over 4500 neuromuscular patients.

The Network team was established in 2007 and developed in parallel to TREAT-NMD (FP6 funded network of excellence for neuromuscular diseases coordinated by Prof. Straub), which has now evolved into TREAT-NMD Alliance and TREAT-NMD Services Ltd. TREAT-NMD provided an infrastructure to ensure that the most promising new therapies reach patients as quickly as possible and much of the expertise and work in the John Walton Muscular Dystrophy Network team has benefitted from the long-standing and ongoing mutually beneficial collaboration.

We have also established additional national networks to address key challenges in the UK, including DMD Hub, DMD Care UK, and Adult SMA Reach.

Skills & Expertise of the Network Team

Stakeholder Engagement

Working with Patients

Organising (Inter)national Events

Building Collaboration

Strategic Vision

Industry Collaboration

Communication

Registry Expertise

Delivery of Education

Gaining International Consensus

Project Management

Establishing Global Networks

Clinical & Research Networks

Adult SMA REACH (Research and Clinical Hub) is a data collection study aiming to gain a better understanding of the impact of standards of care and new treatments on the natural history of Spinal Muscular Atrophy (SMA). This study is sponsored by The Newcastle upon Tyne Hospitals NHS Foundation Trust. Adult SMA REACH is funded by Biogen and Roche.

Elena Karkkainen

Data Manager

Clinical Research

Grecia Alvarez Hernandez

Project Assistant

Clinical Research

Jess Page

SMA Dataset Project Coordinator

Clinical Research

Sonia Segovia

Project Manager

Clinical Research

The BMD Hub is a network of clinical care and research sites in the UK interested in and capable of delivering clinical trials in Becker Muscular Dystrophy (BMD). The BMD Hub is a project coordinated by the John Walton Muscular Dystrophy Research Centre at Newcastle University, funded by Edgewise Therapeutics, based on the DMD Hub model and collaborating with UK patient organisations with an interest in dystrophinopathies.

Jess Elliot

BMD Hub Project Assistant

Networking

Michela Guglieri

Professor of Neuromuscular Disorders

Clinical Research
Clinical Care
Networking

Pietro Riguzzi

Clinical Research Associate

Clinical Research

DMD Care UK is a nationwide initiative to ensure every person living with Duchenne muscular dystrophy (DMD) in the UK has access to the best care, no matter where they live.

We're bringing together expert clinicians and the patient community to agree, communicate and implement DMD standards of care recommendations for the UK. These are based on the international recommendations published in The Lancet Neurology in 2018, but are more specific and adapted for the UK.

Cathy Turner

DMD-Care Project Manager & TACT Coordinator

Networking

Michela Guglieri

Professor of Neuromuscular Disorders

Clinical Research
Clinical Care
Networking

Volker Straub

Harold Macmillan Professor of Medicine

Basic Research
Clinical Care
Clinical Research
Networking

The DMD Hub is a network of trial sites with trained staff which are funded to carry out clinical trials for DMD.

The DMD Hub uses existing UK clinical trial expertise, to provide a central resource offering advice, guidance and training to sites less experienced in running DMD clinical trials.

The DMD Hub engages with key stakeholders at sites and in industry. We facilitate communications between them to accelerate trial readiness. This has already increased the number of UK sites which run DMD trials.

Emma Heslop

DMD Hub Manager

Networking

Megan McNiff

Research Associate: Patient Preference

Networking

Michela Guglieri

Professor of Neuromuscular Disorders

Clinical Research
Clinical Care
Networking

Phil Cammish

DMD Hub Central Recruitment Manager

Networking

Volker Straub

Harold Macmillan Professor of Medicine

Basic Research
Clinical Care
Clinical Research
Networking

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