In February 2022 we announced the launch of the 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, sponsored by Chiesi and CSL Behring.
The project’s aim is to develop non-invasive tools for measuring mobility in rare disease patients with state-of-the-art wearable sensors integrated with Aparito’s Atom5TM clinical trial platform to capture physiological and psychosocial parameters.
Having reached a major milestone with the first successful technical integration, we caught up with the team to find out how the collaboration between Aparito and Yumen Bionics has progressed!
“With DT4RD we set out to create a pioneering toolbox to research and collect data from patients with neuromuscular disease,” says Sjaak Kok, a Development Engineer at Yumen Bionics, a specialist in developing assistive exoskeletons and motion sensors for Duchenne Muscular Dystrophy patients, “and we see DT4RD as a pilot programme for how a device like ours should be built to connect to a healthcare platform.”
Yumen Bionics’ non-motorized upper-body exoskeleton provides close-to-body support that cancels out gravity in every possible natural position of both arms, the data from which is captured alongside patient questionnaires, video capture, and data from other wearable devices to provide rich insight into the daily life of patients living with muscular dystrophy.
Maintaining a patient-centric approach has been a guiding principle and as Caroline LeBarbier, Project Manager at Aparito, points out, “We want the patient to be as autonomous as possible and able to apply and remove the device themselves, and that’s something also that was discussed extensively. We keep in mind the patient burden, not only like the weight of the device but also how long they’re going to wear it and how comfortable it is.”
Aparito and Yumen Bionics have successfully navigated a number of early challenges: the first being how to devise a data structure that was minimal to account for the small memory available in the microchips on the Yumen device!
The first big challenge
Collaborating remotely via bi-weekly meetings, the teams formulated a method to transmit large data packets into the Aparito platform, gradually increasing the amount of data captured.
“We had to agree on a data structure that could be transmitted and received from the Yumen device to the Atom5TM platform”, said Christian Weaves, a Full Stack Developer at Aparito. “We started off with just sending one encrypted data packet and cross-referencing what had arrived with what was sent and then we ramped it up gradually to fifteen minutes’ worth of data.”
This milestone sets a great standard for others wanting to replicate the challenge of capturing more physical data in a digital platform. We’re now able to connect our device’s data to the DT4RD toolbox alongside other wearable data and the platform’s video capture.Alifandri Sangadji, Sensor Electronics and Embedded Systems Development Engineer at Yumen Bionics
With data capture and transmission in place, the next stage of development is the user interface for clinicians and patients and the Aparito Data Science team can access the data for interpretation and analysis – great progress so far!
None of this would be possible without the support of Paris Institut de Myologie (Institute of Myology), The John Walton Muscular Dystrophy Research Centre at Newcastle University, Metabolic Support UK, and our biotechnology and pharmaceutical industry partners, CSL Behring and Chiesi Pharmaceuticals.
As the project progresses we’ll provide updates about this pioneering work!