PHA UK join Welsh health tech startup's Patient Group Accelerator Programme

Aparito are delighted to announce our latest Patient Group Accelerator Programme partnership with PHA UK and welcome them into Aparito’s Patient Group Accelerator Programme to develop endpoints for patients with pulmonary hypertension!

Pulmonary hypertension (PH) is defined by PHA UK as “a rare condition that causes high blood pressure in the blood vessels connecting the heart and lungs (the pulmonary arteries). When a person develops PH, the walls of the pulmonary arteries become stiff and thickened, or blocked by blood clots.”

Aparito's Patient Group Accelerator Programme is designed to understand and fulfil patient needs by working closely with patient organisations and finding new endpoints that are relevant to their specific conditions.

By developing technological solutions, novel endpoints and digital biomarkers designed with patients, the objective is to show the feasibility of a potential new solution as a starting point for future validation and use in clinical trials.

The first stage of the Accelerator explored the unmet needs of PH patients regarding digital outcomes measures through a co-creation approach in partnership with PHA UK. We are privileged to be joined by clinical specialists from the University of Cambridge for this project, and the learnings will inform the design of future PH clinical research!

To date, we have digitised and tested a PH-specific PRO, which was developed by the PH community, and intend to commence a second round to test a digital walk test of functional capacity in January 2023.

"We are excited to partner with Aparito to further assist the PH community, by co-developing new digital endpoints for clinical trials that could be collected in a real-life environment. We hope this will help PH patients participating in clinical trials to improve their trial experience and measure outcomes that better reflect how PH affects their day-to-day life."

Shaun Clayton, Director of Membership Support at PHA UK

"We are very excited to launch this new partnership with PHA UK as part of the Accelerator Programme. This is an excellent opportunity to co-develop patient-driven solutions to support the PH patient community."

Elisa Ferrer Mallol, Patient Advocacy Manager at Aparito

"The Patient Group Accelerator is a critical part of Aparito’s DNA and vision for a patient-centric solution to conveying what’s important to them. As the Accelerator goes from strength to strength, we are thrilled to partner with PHA UK and see this as an exciting addition to the partnerships that we have with ALS Belgium, Duchenne UK and PCD Support UK."

Elin Haf Davies, CEO at Aparito

About PHA UK

We are the only charity in the UK dedicated to supporting people affected by the rare disease pulmonary hypertension (PH).

Our national support network helps patients, their family and carers and NHS professionals too – and we are committed to our values of integrity, hope and influence.

From its launch in the year 2000, the PHA UK has now grown to almost 4,500 members. Our community is like no other; a unique group of people committed to supporting each other and raising awareness of this serious condition in the hope of one day, finding a cure.

About Aparito

Patients living with life-limiting rare diseases need access to clinical trials and innovative treatments.

Aparito digitises clinical trials to provide that access, wherever patients are.

We unlock real-world data through mobile apps, video assessments & wearable devices via Atom5, our iOS & Android-compatible web and mobile app platform.

Available in 193 countries and 125 languages, the Atom5 platform integrates clinical & regulatory expertise to capture patient data and develop digital endpoints for hybrid and decentralized clinical trials to streamline the drug development process.

Notes to Editors

Media relations

Alexander Guest – Head of Marketing, Aparito

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

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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 is a health tech company that transforms clinical trials by unlocking real-world patient data through mobile apps, video-based assessments and wearable devices. Aparito provides innovative patient-centric remote monitoring solutions that integrate specialist clinical & regulatory expertise to capture patient data and develop digital endpoints for both hybrid and decentralised clinical trials through the flagship product Atom5. Atom5 is an iOS & Android-compatible web and mobile app platform. Atom5 captures multiple, high-frequency data points from video, voice, wearables, and electronic Patient Reported Outcomes, then analyses the results in conjunction with the team of in-house data scientists to provide rich, real-time insights to clinical teams. Atom5 is regulator-friendly by design and features eConsent via a partnership with DocuSign, computer system validation and complete data privacy. The global platform operates under ISO14385 QMS and ISO/IEC 27001 ISMS accreditations and is FDA CFR21 Part 11 compliant.
For further information please visit: https://www.aparito.com/

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 applicati


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