TREAT-NMD is the scientific coordinator of the IHI funded project PaLaDIn. The PaLaDIn consortium includes partners from SMEs, academia and patient advocacy organisations, working together to develop and implement a data collection platform – the Interactium®. The project aims to accelerate the development of effective treatments and patient care, enhance healthcare decision-making and improve patient outcomes – beginning with neuromuscular diseases and then intending to share learnings with other rare disease communities.
Following on from a successful Interactium® Futures Board (IFB) workshop in Boston (November 2024), TREAT-NMD recently hosted a virtual IFB meeting which gathered key industry stakeholders to discuss the overall progression of the project and review a drafted white paper which elaborates on key points discussed during the workshop. The IFB brings together a diverse group of 12 industry stakeholders working actively in the neuromuscular disease space which includes, pharmaceutical companies, biotech companies and contract research organisations. The IFB provides key insights into the requirements for industry and offers advice on the development and sustainability of the Interactium®.
The white paper drafted includes details from an industry perspective on real-world data use in neuromuscular disease, including recommendations from the IFB for building a data platform which could be incorporated into the specification of the Interactium®. We intend to publish the white paper in the near future, aiming to provide valuable insights for others working in the rare disease real-world data space.
The procurement process for the PaLaDIn Interactium® data platform development is also progressing, with successful completion of the Market Engagement stage having received responses from 32 providers. This preparatory stage gathered insights from suppliers to understand their capabilities, helping to inform and refine requirements before the formal tendering process commences. The next stage for development includes the formal release of the Request for Proposal which will soon be publicly available and open to responses.
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