Digital Tools 4 Rare Diseases (DT4RD)

Challenge #1: Development of a non-invasive tool for measuring rare disease patient mobility in daily living

ABSTRACT

The Digital Tools 4 Rare Diseases (DT4RD) project aims to use technology which is capable of producing PGD and various other measurements which relate to the overall wellbeing of patients with rare diseases. The technologies which will be used comprise Aparito’s Atom5TM platform, a 3D accelerometer wearable device paired with the Aparito smartphone app, and Yumens Bionics sensors. These technologies will be part of a toolbox that can be used to assess the mobility capacity of patients and their movements. The 30-month long project will consist of two stages. The first stage will involve patient recruitment, identifying digital endpoints and a 12-month feasibility study. The second stage will build upon key findings from the first, and will involve a 12-month world study. During the second stage, a mix of clinical site visits and decentralized trialling will be utilized. This stage will also employ CE regulatory requirements. The project will aim to develop new clinical outcome measures and repositories of mobility/PROM data for patients who are progressively losing their ability to be mobile. Lastly, the project will test the feasibility of a digitized remote patient monitoring approach, in contrast with traditional “on-site” clinical methods. Patient-specific digitized methods have the potential to provide data required to better understand rare diseases and improve treatment outcomes for these patients.

PARTNERS

Name & Nationality

Applicant Category

  • HAF DAVIES, Elin (Coordinator), Aparito
    ⇾ UNITED KINGDOM

SMALL AND MEDIUM ENTERPRISE (SME)

  • HOGREL, Jean-Yves, Institut de Myologie
    ⇾ FRANCE

ACADEMIA

  • MAYHEW, Anna, John Walton Muscular Dystrophy Research Centre

    Research Centre

    ⇾ UNITED KINGDOM

ACADEMIA

  • KLAP, Paulien, Yumen Bionics

    Research Centre

    ⇾ NETHERLANDS

SMALL AND MEDIUM ENTERPRISE (SME)

  • BYRNE, Joanne, Metabolic Support UK

    Research Centre

    ⇾ UNITED KINGDOM

PATIENTS ADVOCACY ORGANIZATION (PAO)