Aparito are proud to announce the launch of 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 to develop non-invasive tools for measuring mobility in rare disease patients. 

The DT4RD project brings together a multinational consortium consisting of Aparito, Paris Institut de Myologie (Institute of Myology), The John Walton Muscular Dystrophy Research Centre at Newcastle University, Yumen Bionics, Metabolic Support UK, along with biotechnology and pharmaceutical industry partners, CSL Behring and Chiesi Pharmaceuticals who will both serve as the sponsors of the project. 

In order to meet the objective set by the call the project consortium will develop a digital platform capable of assessing upper limb function remotely and continuously, capturing the point between being ambulant and non-ambulant, a pivotal juncture in the progression of rare diseases which is often not accounted for with the use of conventional clinical methodology and tools. 

Over the course of three years, 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. 

Improving the lives of patients with rare diseases is very important to us here at Aparito so it is a privilege to collaborate with a very dedicated and talented team who also share this passion. We are very excited about what we can achieve together and can’t wait to see the positive impact on the lives of patients.

Dr Elin Haf Davies, Aparito CEO

The DT4RD project is one of the 3 projects selected for funding within the RDR Challenges call led by Fondation Maladies Rares and EJP RD. We are very excited about this innovative project fostering public-private partnerships and combining EC funding and co-funding from industry partners to the benefit of patients.

Dr Christine Fetro, Foundation for Rare Diseases

Projects like DT4RD are a prime example of the type of collaboration that is needed between industry, academia, and patient organizations to bring about positive changes in the lives of patients living with a rare disease. That is why the EJP RD decided to initiate, support and is proud to facilitate RDR Challenges.

Dr. Daria Julkowska, European Joint Programme on Rare Diseases

We are very excited and honoured to take on the challenge to innovate future clinical trials. Together with a complementary team of clinical, tech and experience experts we’ll explore the possibilities of remote monitoring to change the experience of rare disease patients. We can’t wait to get started.

Paulien Klap, Lead Product Engineer – Yumen Bionics

DT4RD represents a great opportunity to move towards a new evaluation paradigm. Recent events have unfortunately shown that patients sometimes suffer a loss of clinical follow-up. New digital solutions should avoid such situations. The Institute of Myology is enthusiastic to participate to the development and validation of such novel tools.

Dr Jean-Yves Hogrel, Director of the Neuromuscular Physiology and Evaluation Lab, Institut de Myologie (Paris)

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.

Professor Volker Straub, Director of The John Walton Muscular Dystrophy Research Centre and Deputy Dean, Translational and Clinical Research Institute, Newcastle University and Newcastle upon Tyne Hospitals NHS Foundation Trust

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.

Dr Anna Mayhew, Consultant Research Physiotherapist at Newcastle University

This innovative project, bringing together a group of leading international experts, is a step forward for patients with rare disease. Our patient communities need access to non-invasive tools that allow them to contribute to research but do not increase their everyday burden. We are also delighted that, by involving a patient organisation from the outset, the DT4RD project has committed to embedding the lived experience of rare disease patients in the project.

Metabolic Support UK

As a patient focused organization, CSL is always looking for innovative ways to enhance the experience of rare disease patients in our clinical trials. We are hopeful that this project will have a broad impact for our industry by creating a novel approach to measuring mobility. We are excited for the opportunity to partner on the promising DTR4D project with world class researchers, Chiesi, as well as EJP RD, EURORDIS and French Rare Disease society.

Deirdre BeVard, Senior Vice President of R&D Strategic Operations, CSL Behring

We are proud to join together with EJP RD, EURORDIS, FFRD as well as CSL Behring in efforts to address areas of high unmet need and support innovations that may ultimately help us provide optimal support to patients and families affected by rare diseases. Being part of DT4RD project is very exciting. We look forward to work with the Team to improve the quality of life of rare disease patients.

Chiesi Group

For more information on the respective members of the project team please visit the links attached below: 

About the European Joint Programme on Rare Diseases – https://www.ejprarediseases.org/fundings-and-calls/rare-diseases-challenges/

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 Fondation Maladies Rares (Foundation For Rare Diseases (FFRD))

FFRD is a unique cooperative framework coordinating research resources and expertise in the Rare Disease (RD) field. Flagship of the 2nd French National Rare Diseases Plan, FFRD acts as a federative hub to fund research and accelerate scientific, clinical and social innovation by stimulating cross-sector cooperation towards effective healthcare to the benefit of RD patients. Its active financial support spans from biomedical sciences to Social Sciences and Humanities. Since its creation in 2012, FFRD has funded 417 projects (out of 1270 submitted) for a cumulated amount of 12,3M€. With headquarters located in Paris, FFRD also relies on a team of regional field coordinators in direct contact with academic and clinical teams all over the national territory to ensure that priorities are driven by grounded needs. FFRD main objectives include: accelerating the translation of research into clinical development; detecting business development opportunities; enhancing access to innovative technologies; facilitating cross-sector partnerships. With its close contacts with academic researchers and clinicians in the field, FFRD is contributing to early identification of proofs of therapeutic concept and making links with other partners in the research value chain, namely Small and Middle-sized Enterprises (SMEs), Pharmas, and Technology Transfer Offices (TTOs). For further information please visit: https://fondation-maladiesrares.org/

About Yumen Bionics 

Yumen Bionics is a Duchenne focused medtech SME, developing technology for people living with neuromuscular diseases. Yumen Bionics was founded by the Duchenne Parent Project NL resulting in a profound collaboration with the community. For further information please visit: https://yumenbionics.com/ 

About Paris Institut de Myologie 

The Institute of Myology was created in 1996 by AFM-Telethon to diagnose, treat patients and study muscle diseases, in partnership with five public bodies (AP-HP, CEA, Inserm, Sorbonne Université and CNRS). This centre of expertise, unique in the world, focused on the patient, promotes the existence and recognition of Myology by bringing together in one-place activities of evaluation, diagnosis and care, fundamental, applied and clinical research and teaching. With 250 muscle experts (technicians, doctors, researchers, etc…) it has innovative investigation and measurement tools at its disposal for diagnosis, management and monitoring of neuromuscular diseases: a Myology Research Centre composed of 10 teams; a Neuromuscular Exploration and Evaluation Centre composed of three laboratories and a Biological Resources Centre, Myobank-AFM ; two clinical research platforms and a Registries and Databases Centre; a Neuro-Myology clinical service for neuromuscular patients; an international training centre ensuring the dissemination of knowledge on Myology. For further information please visit: https://www.institut-myologie.org/en/ 

About The John Walton Muscular Dystrophy Research Centre, Newcastle University: 

The John Walton Muscular Dystrophy Research Centre works across Newcastle University and the Newcastle Hospitals NHS Foundation Trust and is located within the University’s Institute of Translational and Clinical Research, which is part of the Faculty of Medical Sciences. The Centre has a strong interest in the development and application of genomic and translational medicine for neuromuscular diseases with a clear emphasis on improving health outcomes for this patient group. The John Walton Muscular Dystrophy Research Centre sits in crucial strategic areas of increasing importance to the national and international research agendas – translational medicine, genomic and personalised medicine and rare diseases. The team has an extensive track record of leadership in the international community in projects on translational neuromuscular research, policy direction in rare diseases, patient registries, biobanking, muscle imaging and clinical trials. The Centre is part of the International Centre for Genomic Medicine in Neuromuscular Diseases (ICGNMD) and works closely with the World Muscle Society, EURO-NMD and the TREAT-NMD Alliance. For further information: John Walton Muscular Dystrophy Research Centre – John Walton Muscular Dystrophy Research Centre (newcastle-muscle.org)

About Metabolic Support UK

Metabolic Support UK are the leading patient organisation for Inherited Metabolic Disorders supporting thousands of patients worldwide. For more information please visit: Home – Metabolic Support UK 

About CSL Behring

CSL Behring is a global biotherapeutics leader driven by our promise to save lives. Focused on serving patients’ needs by using the latest technologies, we discover, develop and deliver innovative therapies for people living with conditions in the immunology, hematology, cardiovascular and metabolic, respiratory, and transplant therapeutic areas. We use three strategic scientific platforms of plasma fractionation, recombinant protein technology, and cell and gene therapy to support continued innovation and continually refine ways in which products can address unmet medical needs and help patients lead full lives.

CSL Behring operates one of the world’s largest plasma collection networks, CSL Plasma. The parent company, CSL Limited (ASX:CSL;USOTC:CSLLY), headquartered in Melbourne, Australia, employs more than 25,000 people worldwide, and delivers its life-saving therapies to people in more than 100 countries. For inspiring stories about the promise of biotechnology, visit Vita CSLBehring.com/vita and follow us on Twitter.com/CSLBehring.

About Chiesi Group:

Based in Parma, Italy, Chiesi is an international research-focused pharmaceuticals and healthcare group with over 85 years’ experience, operating in 30 countries with more than 6,000 employees (Chiesi Group). To achieve its mission of improving people’s quality of life by acting responsibly towards society and the environment, the Group researches, develops and markets innovative therapeutic solutions in its three focus areas: AIR (products and services that promote respiration, from new-born to adult populations), RARE (treatment for patients with rare and ultra-rare diseases) and CARE (products and services that support specialty care and consumer-facing self-care). The Group’s Research and Development centre is based in Parma and works alongside 6 other important research and development hubs in France, the U.S., Canada, China, the UK, and Sweden to pursue its pre-clinical, clinical, and regulatory programmes. Chiesi, since 2019, is the world’s largest B Corp certified pharmaceutical group. The global B Corp movement promotes business as a force for good. Moreover, Chiesi Farmaceutici S.p.A. has changed in 2018 its legal status to a Benefit Corporation, by incorporating a double purpose for the creation of shared value, and to generate value for its business, for society and the environment. As a Benefit Corporation, Chiesi Farmaceutici S.p.A. is required by law to include objectives of common benefit in its bylaws and to report annually in a transparent way. The Group is committed to becoming carbon neutral by the end of 2035. For further information: www.chiesi.com 


Media relations

Alexander Guest – Head of Marketing, Aparito

E-Mail: alexander.guest@aparito.com Tel: +44 1978 896 191