Promptly Health, PaLaDIn and TREAT-NMD build Interactium® for EU rare diseases
12/02/2026Press Release
Lisbon/London, February 2026
Promptly Health and PaLaDIn collaborate to build the Interactium®, a federated real-world data collection platform for the EU rare disease initiative.
Promptly Health, a European leader in access to real-world data and patient-generated health insights, today announced a strategic collaboration with TREAT-NMD and the PaLaDIn consortium to develop the Interactium®, a digital platform designed to transform how data is collected, connected, and leveraged to improve outcomes for people living with rare neuromuscular diseases. Following a comprehensive procurement process, Promptly Health was selected as the technology partner to deliver this groundbreaking platform.
Building on the Promptly Federated Health Data Platform, the Interactium® will integrate registry data, patient-reported outcomes and medical device data to provide a more comprehensive view and the natural history of a patient's condition. The federated architecture ensures data remains secure and under patient control while enabling research collaboration across borders, a critical capability for rare diseases where patient populations are small and geographically dispersed.This data could be used to support health care decision making, by using data that's important to patients and reflects their lived experience. The platform is a cornerstone of PaLaDIn, an Innovative Health Initiative (IHI) funded project focused on improving how data supports research and care for rare conditions, starting with Duchenne Muscular Dystrophy (DMD) and Facioscapulohumeral Muscular Dystrophy (FSHD).
This collaboration strengthens Promptly Health's mission to empower every patient and every health organisation with evidence on the outcomes of care. By working together with the PaLaDIn partners, Promptly aims to make neuromuscular data more usable, connected, and impactful for research, clinical practice, and innovation in the field.
David Allison, CEO of TREAT-NMD, said: “TREAT-NMD carried out a comprehensive procurement process that identified Promptly Health as our preferred supplier. Throughout this process, and in the early discovery stage of the build programme, the team at Promptly Health have been professional, helpful, personable, responsive and a pleasure to work with. This gives us confidence that we have chosen the right development partner and that together we will succeed. The whole PaLaDInconsortium is excited about developing the innovative Interactium® data platform and bringing benefits to patients with neuromuscular disease.”
A collaboration built to deliver real impact.
Data for rare disease patients is scarce, siloed, and the patient voice is often missing. Good quality clinical and patient-reported data exists, but it is difficult to combine and link different sources of data. This results in a lack of knowledge about diseases and a delay in diagnosis and medicine development. This means that opportunities for healthcare decision makers, researchers, and drug developers to use this data to develop better care, treatment, and understanding of neuromuscular diseases are lost.
In rare disease research, most of the data currently collected comes from clinical settings, such as hospitals and medical facilities. This type of data often focuses on the medical aspects of the condition, like diagnostic tests and treatments, but it doesn't always capture the personal experiences of patients. PaLaDIn will try to change this by collaborating with Promptly Health to develop the Interactium® data collection platform which will link together clinical data collected in patient registries with patient reported data.
The Interactium® is aligned with the European Medicines Agency (EMA) strategy which, in 2025, has solidified its commitment to a patient-centric regulatory model by mandating the integration of Patient Experience Data (PED) into every stage of the drug lifecycle to ensure that new therapies are evaluated against real-world quality-of-life metrics and unmet needs.
Pedro Ramos, CEO of Promptly Health, added, “We are honoured to work with PaLaDIn partner TREAT-NMD, an organisation that we’ve used as a benchmark for our work in neuromuscular diseases in the past. Together, we will have the opportunity to demonstrate that data can improve lives. The Interactium® will demonstrate how data can be used to help a population with significant unmet clinical needs to accelerate the development of diagnoses and treatments that can improve quality of life for people living with neuromuscular diseases.”
Governance and Privacy
Data within the Interactium® will remain governed by patient consent and robust privacy protections, with transparent data use and clear access controls aligned with EU regulations. The platform adheres to established data stewardship standards to ensure trust, accountability, and responsible data sharing across all participating partners.
About Promptly Health
Promptly Health is a European leader in federated health data platforms, enabling secure access to real-world data and patient-generated health insights. The company’s privacy-preserving technology allows healthcare organizations, researchers, and pharmaceutical companies to leverage patient data across a network spanning 48 million lives in the UK and EU, and 370 hospitals across Europe, while maintaining data sovereignty and GDPR compliance. For more information, visit www.promptlyhealth.com.
About PaLaDIn
PaLaDIn (Patient and Lifestyle Disease Data Interactium®) is an Innovative Health Initiative (IHI) funded project launched in 2024. The project brings together leading universities, SMEs, and patient organizations to create a state-of-the-art data platform focused on rare neuromuscular diseases. PaLaDIn is supported by the European Union's Horizon Europe research and innovation programme. For more information, visit www.project-paladin.eu
About TREAT-NMD
TREAT-NMD is a global network for translational research in rare neuromuscular disorders, operating patient registries across 50 countries and uniting patients, clinicians, researchers, and industry stakeholders. Established in 2007, TREAT-NMD has been instrumental in advancing research, care guidelines, and clinical trial readiness for neuromuscular diseases. For more information, visit www.treat-nmd.org
