The John Walton Muscular Dystrophy Research Centre (JWMDRC) is based at Newcastle University, UK and is internationally recognised as a world leading centre for care and translational research in Neuromuscular diseases. The centre is structured around four important Strands of activity; Clinical Care & Diagnostics, Clinical Research, Laboratory Research and Networking & Collaborations. Collectively staff from the JWMDRC bring to PaLaDIn over 20 years’ experience working in European projects aimed at advancing the care, diagnosis and treatment of neuromuscular diseases. JWMDRC staff bring their experience and expertise to the project in numerous ways:

Leadership

Prof. Volker Straub, a key opinion lead in the field of neuromuscular diseases, is the JWMDRC Centre Director and Clinical Lead of PaLaDIn. Volker brings expertise in the planning and successful delivery of EU funded projects. He was the co-founder of the EU-funded FP6 network of excellence for rare inherited neuromuscular diseases, TREAT-NMD, and established TREAT-NMD Services Ltd., the business arm of the TREAT-NMD Alliance. Volker’s role in PaLaDIn is to provide clinical leadership and guidance on the strategic direction of the PaLaDIn project.

Becca Leary is a Senior Project Manager at the JWMDRC and PaLaDIn Scientific Programme Lead. Becca’s role is to lead on the scientific and strategic direction of the project as a whole, as such she is also part of the project management team. Becca has provided her project management expertise to many EU projects including IHI project conect4children (c4c), by leading work packages on data harmonisation and standardisation and training and education.

Development of resources to support clinical trials in Neuromuscular Diseases

Emma Heslop, co-lead of the PaLaDIn work package to develop innovative and validated tools for an integrated platform, DMD Hub Programme Manager and JWMDRC Networking Strand Lead, has led on establishing and running the DMD Hub an initiative which, in partnership with Duchenne UK, has successfully expanded clinical trial capacity for Duchenne muscular dystrophy (DMD) trials in the UK. Phil Cammish, DMD Hub Central Recruitment Database Manager, has developed the Clinical Trial Finder and Central Recruitment Database, which are two of the DMD Hub resources that supports patient recruitment into DMD clinical trials. Emma and Phil are working with Duchenne UK to build an integrated Duchenne data platform that includes validated tools and resources developed as part of the DMD Hub. With the help of Technical Project Managers Nagendra Aleri and John Dawson, within PaLaDIn they plan to scale-up and disseminate learning from the development of this platform to benefit other neuromuscular and rare diseases.

Communication and dissemination

Joanne Lee, Communication and Dissemination project manager, and Becca Leary use their collective experience in communicating and disseminating progress and results from other EU projects, including conect4children, to lead the PaLaDIn work package on Communication and Dissemination. Their role is to raise awareness of the project externally and engage with key stakeholders including patients, pharmaceutical representatives, researchers, clinicians and health care decision makers. They will also lead on work to identify rare disease communities who are most able to benefit from adopting the tools developed in PaLaDIn and create toolkits to support their adoption into those communities.

Data Harmonisation and standardisation

Avril Palmeri, Data Officer, and Becca Leary bring their experience of leading a work package in the IHI project conect4children around data harmonisation and standardisation in paediatric clinical trials to PaLaDIn.  They will be supporting partners within a work package that will apply the principles of FAIR (Findable, Accessible, Interoperable Reusable) data collection to the Interactium data platform. This could lead to faster access to medical data, which could improve care coordination and allow healthcare decision makers to make more informed decisions.

Together the JWMDRC PaLaDIn team will collaborate with all PaLaDIn partners to ensure that the PaLaDIn vision to develop and implement an innovative data collection platform to accelerate the development of effective treatments and patient care, enhance healthcare decision-making and improve patient outcomes is achieved.

Find out more about the John Walton Muscular Dystrophy Research Centre here:

Website: https://jwmdrc.org/
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