April 23 2024, 10:00 CEST
Following our last press release in 2023, 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, reached a major milestone: The Institute of Myology announced proudly that their 20th and last patient was recruited into the study on the 29th March 2024!
We are delighted to have reached our recruitment objective. This is a major milestone. Patients have worked hard with our team of specialists. The next phase will consist of extracting and analysing as much data as possible to deeply explore the relationships between hospital and home measurements
Dr Jean-Yves Hogrel, Director of the Laboratory of Neuromuscular Physiology and Evaluation at the Institute of Myology
The main objective of the DT4RD project is to develop and validate a way to acquire, transfer, store and process heterogeneous data related to movement measured at home and anchored to assessments performed at the hospital.
The study involves the use of state-of-the-art wearable sensors integrated with Aparito’s Atom5TM eCOA platform to measure physical activity and movement at home. The platform is also used to measure a patient’s upper and lower limb function via video assessments and psychosocial parameters via its ePRO capabilities.
Patients enrolled on the study range from 24 to 60 years, including 11 men and nine women, living with neuromuscular diseases, either Becker Muscular Dystrophy (one patient), DM1 (five), FHSD (five), Congenital RYR1-associated myopathy (one), Mitochondrial cytopathies (POLG disease) (one) and LGMD (seven) – all have contributed to significant insight with more than 120 video tasks already captured, 1750 days worth of wearable and sensor data, and 100 data points across Patient Reported Outcomes.
We acknowledge the significant efforts from the Institute of Myology and the patients who agreed to join this study. Thank you! This is a significant milestone towards anchoring home vs hospital measurements in the field of neuromuscular diseases.
Dr Elin Haf Davies, CEO of Aparito
This European study involves renowned clinical experts from the Institute of Myology (Paris, France), and the John Walton Muscular Dystrophy Research Centre (Newcastle, UK).
By digitising clinically meaningful procedures, Aparito leads this project with European clinical partners as well as renowned technology and industry partners to provide real-time visibility of data collection and integrity, reducing patient and site burden, enhancing the patient experience, and improving patient retention. This EJP-DT4RD study is supported by the Atom5TM eCOA platform’s innovative technology in the patient’s homes using a study-specific smartphone app, video assessments, and wearable technology to deliver meaningful data through eCOAs and the development of digital biomarkers.
This EJP-DT4RD study is supported by the Atom5TM platform’s innovative technology in the patient’s homes using disease-specific smartphone apps, video assessments, and wearable technology to deliver meaningful data through eCOAs and the development of digital biomarkers.
About Aparito
Aparito’s mission is to digitize clinical trials and accelerate drug development for patients with life-limiting diseases by supporting patient-centric clinical trials with innovative treatments. Clinical trials can be conducted within patients’ homes by leveraging our Atom5™ platform incorporating disease-specific smartphone apps, video assessments and wearable technology to deliver digital clinical trials using novel eCOA to generate continuous real-world data. Aparito’s patient-generated data platform is disease-agnostic and scalable, ready for rapid deployment in global rare disease studies.
About the Institute of Myology
The Institute of Myology, located in Paris, coordinates medical management, research, and education related to muscle diseases and injuries. It is an international reference centre that participates in numerous trials and clinical studies, with a focus on neuromuscular diseases, high-performance sports, and ageing. The Institute of Myology Association facilitates the coordination of site activities in partnership with five public guardianship organisations, and the institute includes a complete Centre of Research in Myology and several scientific poles as well as clinical activities.
Find them on https://www.institut-myologie.org/en/
About the EJP-DT4RD project
The European Joint Programme Digital Tools for Rare Disease (EJP-DT4RD) is a unique project involving Academics (Institute of Myology, John Walton Muscular Dystrophy Research Centre), SMEs (Aparito, Yumen Bionics), large pharmaceutical companies (Chiesi, CSL Behring), and a patient organisation (MSUK) working towards the same objective for and with patient involvement. It widens the horizon of tremendous possibilities for the future of research in rare diseases and warrants hope for future clinical trials using Real World data.
Find out more at https://www.ejprarediseases.org/rare-diseases-research-rdr-challenge-1-digital-tools-for-rare-disease-dt4rd/
