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.”

Patient Group Accelerator Programme

The Accelerator 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.

Learn more about PHA UK here.

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. 

Learn more about Aparito’s Patient Group Accelerator Programme here.

Sign up for our newsletter to receive our latest papers, posters and platform updates direct to your inbox!