The EURO-NMD Registry Hub’s primary aim is to support our patients’ care and guarantee the delivery of the highest standards of diagnosis and treatment across Europe while providing follow-up and improved management for undiagnosed patients.
At the same time, the Registry enables research opportunities for clinical trials, translational research and epidemiological studies, increasing patients’ access to research and knowledge generation.
- Pseudo-anonymised data collection for all the patients seen within the network by each of the 82 healthcare providers that compose EURO-NMD
- The possibility of aggregating existing data sources for neuromuscular diseases to our data collection, with or without data transfer per existing regulations, namely GDPR. The Registry Hub guarantees the data analysis, without data transfer, from different data sources, connected via data FAIR points, under regulated access as detailed in the Data Access Policy (INSERT LINK)
- Provide an user-friendly platform simplifying data entry tasks with time-saving customisation of the workflow by branching logics
- Collection of demographic data helping to build a clearer epidemiological picture for Neuromuscular Disorders in Europe.
- Identification of patient-cohorts for clinical research, namely participation in clinical trials.
- Natural history with deep phenotyping and continuous longitudinal real world data collection for specific neuromuscular diseases subsets.
- Monitoring of care delivery by Key Performance Indicators based on clinical and patient outcome measures.