Between the 3rd-4th March 2025, the PaLaDIn consortium met in Rome for their annual General Assembly meeting. The PaLaDIn consortium includes eight partners from five countries across Europe and the US. Partners work closely together, often remotely, so this was a great opportunity to meet and collaborate in person. Participants of the meeting not only reflected on the progress of the project but came together through a series of presentations and workshops to develop a work plan for the next year of the project. In this article we will provide updates on some of the highlights from the meeting.
Graham Kay from PaLaDIn scientific coordinator TREAT-NMD gave a presentation on the plans for the build of the Interactium® data platform. The Interactium will be an innovative, secure, and high-quality data collection platform, that will accelerate the development of effective treatments and patient care, enhance healthcare decision-making and improve patient outcomes. TREAT-NMD and other beneficiaries are working on finalising the technical requirements for the Interactium and a tender process will be initiated soon to identify a suitable vendor to build the data platform. We will provide updates about the Interactium build via our website, LinkedIn account and Newsletter. You can read our latest newsletter and sign up to receive future newsletters here.
Becca Leary, PaLaDIn project lead, brought the consortium together in a workshop designed to develop a plan to create a Value Based Framework to implement within the project. This approach can help to shift the focus of healthcare onto the outcomes that matter most for patients. Value in healthcare is realised when the best possible health outcomes are achieved for a given patient population within the resources available. To understand and measure what is the best outcome for patients, it is important to capture their views and experiences of their disease. Co-creation of resources developed within PaLaDIn is an essential part of the project. This is a methodology that involves the end users of a product, service or system in its design. For PaLaDIn this means co-creation with patients, which is why the PaLaDIn consortium includes three Patient advocacy organisations: FSHD Society, Duchenne UK and PaLaDIn coordinator Parent Project Aps. We are keen to ensure that all resources and tools developed in PaLaDIn capture the needs of patients, and we are planning a number of engagement activities to capture patients’ feedback. If you are a patient with a neuromuscular or other rare disease, we encourage you to complete this patient survey on our website (translations available in English, Dutch, Italian and German).
Martijn Kersloot from PaLaDIn beneficiary Amsterdam University Medical Centre held a workshop to capture input from the consortium 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. Data within the Interactium will undergo a FAIRification process to standardize the structure of patient data from various sources, enabling their integration. This allows the PaLaDIn project to offer decision-makers and other stakeholders a comprehensive data source that incorporates both clinical and patient-reported information. The team from Amsterdam University Medical Centre are now going through the feedback from the workshop to help inform their work plans.
David Allison, CEO of PaLaDIn Scientific Coordinator TREAT-NMD, gave a presentation about the issues and potential options for a sustainable model for business continuity of PaLaDIn. After discussions with the consortium, it was agreed that a Business Continuity Working Group would be set-up to explore further options for sustainability. The first meeting of this group will take place in May. We will provide updates on their progress throughout the duration of the project.
PaLaDIn consortium members were joined in this meeting by members of the PaLaDIn Ethics Board and the PaLaDIn External Advisory Board (EAB). This meeting was the first opportunity for the PaLaDIn Ethics committee to meet and provide feedback on the work and progress within the PaLaDIn consortium. The role of the Ethics committee is to review and provide guidance and recommendations to the PaLaDIn consortium from an ethical point of view. The PaLaDIn EAB is responsible for providing an external perspective on the activities, objectives and direction of PaLaDIn and its plans for sustainability. At the end of the meeting, the EAB and Ethics committee provided their respective feedback. Partners are now working on implementing this feedback. The PaLaDIn consortium would like to extend their sincere thanks to the EAB and Ethics committee for their participation and invaluable feedback.
We would also like to thank Parent Project Aps for arranging and hosting this great meeting in wonderful Rome!
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