The EURO-NMD Registry Hub aims to significantly contribute to the landscape of rare neuromuscular diseases in Europe. This article provides an overview of the EURO-NMD Registry Hub various stages of development with its new registry, innovative federated infrastructure as well as the optimistic progress to date.
About EURO-NMD Registry Hub
The EURO-NMD Registry Hub, an EU-funded initiative, aims to positively impact the landscape of rare neuromuscular diseases in Europe. By collating clinical and genetic data alongside patient-reported outcomes, this centralised and standardised database fosters a collaborative environment involving healthcare providers, experts, and patient organisations. The primary objective is to elevate patient care and research through an extensive repository of valuable data, enhancing diagnostics and treatments.
Layman report available
For a more detailed overview of the EURO-NMD Registry Hub impact, a layman’s report is available in PDF format. Download the report by clicking the button below.
Coordination and Management (WP1)
The project’s coordination and management, led by APHP, played a pivotal role. With meticulous execution of tasks within the designated reporting period, the consortium ensured smooth governance under the guidance of the EURO-NMD Project Manager, Project Coordinator, and the Steering Committee. Documents facilitating data sharing, including data sharing agreements and consent forms, have been through a rigorous development process and are now available. While most deliverables and milestones were met on schedule, more time was required to submit the final report and to overcome some challenges related to investigating a safe transfer of data. Now, patient enrollment can finally start.
Dissemination for Impact (WP2)
In Work Package 2, the focus was on disseminating project developments to diverse stakeholders. Timely communication, regular updates, and collaborative engagement characterised the project’s interaction with consortium partners, IT developers, Healthcare Providers (HCPs), and Patient Organisations (POs). The robust communication strategy employed, inclusive of websites, social media, newsletters, and training workshops, facilitated awareness, collaboration, and user engagement.
Evaluating Output and Impact (WP3)
In Work Package 3, the project’s output and impact were rigorously evaluated through the establishment of the Independent Advisory Committee (IAC). This committee brought together experts including those in data management, ethics, and policy. Their insights and recommendations not only ensured the registry’s quality and functionality but also influenced health policy advancements, thereby contributing to the project’s sustainable development and broader implementation.
Design and Development (WP4)
Work Package 4 focused on designing a user-friendly EURO-NMD Registry. With a comprehensive approach, the project crafted manuals, FAQs, and guides to assist users, while testing and refining the software ensured usability. By gathering feedback from healthcare providers and utilising a training environment for testing, the registry was honed to be a valuable resource for professionals and researchers in the neuromuscular field. Direct patient involvement in the registry is anticipated in the near future.
Interoperability and FAIRification (WP5)
In Work Package 5, the project achieved significant milestones by establishing interoperability and FAIRification of the registry. The successful proof-of-concept demonstrated the ability of EURO-NMD registry to be jointly queryable with other independent registries, fostering data exchange while safeguarding patient confidentiality. This pioneering effort enhances the registry’s value by making data more Findable, Accessible, Interoperable and Reusable (FAIR), thus promoting convergence and collaboration across registries.
Quality Measurement and Outcome Indicators (WP6)
In Work Package 6, the focus was on developing quality and outcome indicators to assess care quality performance. The integration of essential performance metrics into the registry allows for the continuous monitoring of patient care quality and outcomes. By offering benchmarking and detailed reports, this step ensures that EURO-NMD Registry Hub remains a robust tool for advancing patient care and research.
The EURO-NMD Registry Hub stands as a testament to collaborative efforts, data-driven innovation, and a commitment to improving the lives of individuals with rare neuromuscular diseases. Through streamlined coordination, effective dissemination, impact evaluation, seamless design, interoperability, and quality assessment, the project is forging a path towards a meaningful future for the rare neuromuscular community in Europe.
EURO-NMD Registry Hub impact in summary:
To conclude, the EURO-NMD Registry Hub stands as a testament to collaborative efforts, data-driven innovation, and a commitment to improving the lives of individuals with rare neuromuscular diseases. Through streamlined coordination, effective dissemination, impact evaluation, seamless design, interoperability, and quality assessment, the project is forging a path towards a brighter future for the rare neuromuscular community in Europe.