Exploring novel ways to monitor motor function
Newcastle has been chosen as a clinical centre and a consortium partner for a project to develop non-invasive tools for measuring mobility in rare disease patients.
Volker Straub and Anna Mayhew from the John Walton Muscular Dystrophy Research Centre will be the Newcastle leads for the three-year ‘Digital Tools for Rare Disease’ project (DT4RD), a product of the Rare Disease Research call placed by the European Joint Programme on Rare Diseases in partnership with Fondation Maladies Rares.
The project consortium will develop a digital platform capable of assessing many aspects of mobility including upper limb function remotely and continuously, capturing the stage between being mobile and non-mobile, a pivotal juncture in the progression of rare diseases which is often not accounted for with the use of conventional clinical methodology and tools.
Commenting on this Volker Straub said:
“This is a very timely and exciting project, as the COVID-19 pandemic has illustrated how important it is to assess patients remotely. Exploring novel ways to monitor motor function remotely using smart technologies will ultimately make lives of patients with motor impairments easier.”
The project brings together an exciting multinational consortium consisting of:
Paris Institut de Myologie (Institute of Myology)
The John Walton Muscular Dystrophy Research Centre at Newcastle University
CSL Behring and Chiesi Pharmaceuticals (both serving as the sponsors of the project)
Aparito’s Atom5TM software platform will be integrated with state-of-the art wearable sensors developed by Yumen Bionics to create an integrated platform which will amass data covering physiological and psychosocial parameters and will be tested across two clinical centres in Paris and Newcastle, UK, respectively.
Commenting on future steps Anna Mayhew said:
“We are very much looking forward to this cross-cutting collaboration where experts in technology, remote monitoring, clinicians and individuals living with motor impairments can deliver meaningful gains suitable for wider populations.”
Professor Volker Straub is Director of The John Walton Muscular Dystrophy Research Centre, Deputy Dean, Translational and Clinical Research Institute and Deputy Theme Lead for the BRC’s Neuromuscular Theme.
Dr Anna Mayhew is a Consultant Research Physiotherapist at The John Walton Muscular Dystrophy Research Centre and Consultant Research Physiotherapist Newcastle upon Tyne Hospitals NHS Foundation Trust.