As we come to the end of the second year of Project PaLaDIn, we would like to reflect on our achievements as we look forward to what lies ahead for 2026.
The project held a successful General Assembly in Rome in March. The GA was an opportunity for partners to reflect on the progress made during the first year of the project and to develop a workplan for the coming year.
In April, we opened the market engagement process to seek views and opinions of organisations interested in developing the Interactium® data platform. This was followed by a successful invitation to tender which opened in June. As this work progresses, we are looking forward to sharing exciting updates about the development of the Interactium®, and associated resources throughout 2026. The Interactium® will be an innovative, secure, accessible, user-friendly and high-quality data collection platform, which will be used to accelerate the development of effective treatments and patient care, enhance healthcare decision-making and improve patient outcomes.
The PaLaDIn consortium developed two key deliverables to improve patient experiences: (1) a user experience and user interface (UX/UI) framework that will guide the Interactium design and (2) a prototype for a care tool that allows patients to generate reports from their registry data for their clinicians, which are linked to evidence-based care guidelines. Created through participatory design with patients, caregivers, and stakeholders, these tools are now moving into prototype development and integration into the Interactium platform. These deliverables aim to empower patients by fostering clearer communication with healthcare providers, encouraging a more active role in research, and establishing a foundation for a patient-centred approach in rare disease research.
The PaLaDIn consortium have been working together to identify ways to maximise the benefits of the Interactium®, using FSHD as a case study. To support this work, TREAT-NMD began a tender process to identify a provider to generate a Health Technology Assessment (HTA) disease-model in FSHD. The tender process is now complete, and a preferred provider has been identified.
Work led by Amsterdam University Medical Centre and Leiden University Medical Centre is ongoing to ensure that the Interactium® is FAIR (Findable, Accessible, Interoperable and Reusable) by design. Applying the principles of FAIR data collection to the Interactium® data platform could lead to faster access to medical data, which could improve care coordination and allow healthcare decision makers to make more informed decisions.
Development of the FSHD and DM1 datasets and associated data dictionaries has been led by the team at Munich University. These will now progress through the TREAT-NMD engagement process with a series of stakeholder workshops which commenced in November and will conclude in late February/ early March 2026. This ensures that the dataset development not only has the required clinical and academic rigour but that the requirements and practical considerations of the other stakeholders such as registries and regulators are addressed.
Duchenne UK and Newcastle University co-lead tasks bringing together key stakeholders including patients, clinicians, researchers and key opinion leaders in the field of neuromuscular disease to design practical tools for the UK Duchenne community. The learning and insights from the tools developed through this work will inform other disease areas, enabling solutions and tools that might be adapted and implemented within the wider Interactium®. The platform which includes modules related to research and care – linking the DMD Hub tools (Central recruitment database and clinical trial finder) and DMD Care UK into a single test platform has been developed and is currently in the pilot phase. More information will be shared during 2026 as this work progresses.
PaLaDIn partners have engaged in several patient engagement activities such as the Becker muscular dystrophy education and engagement day in Newcastle, organised by TREAT-NMD and the Duchenne and Becker muscular dystrophy regional meeting organised by PaLaDIn coordinator Parent Project in Italy. Engagement activities are an important way to connect with patients and caregivers to ensure resources meet their needs.
In October, we announced that applications for expressions of interest were open for patients and caregivers with lived experience of neuromuscular diseases to join the PalaDIn Patient and Caregiver User Group (PCUG). The PCUG will play an important role in the project, contributing to the development of patient-centred resources, expanding on the engagement activities described above. We look forward to engaging with the PCUG over the next two years to ensure the patient voice is central to everything we do.
We are looking forward to another successful year for Project PaLaDIn!
We wish all of you a relaxing holiday season and a healthy, happy, and peaceful year 2026.
PaLaDIn Project Management Team
