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Fig. 2 | Orphanet Journal of Rare Diseases

Fig. 2

From: The Italian neuromuscular registry: a coordinated platform where patient organizations and clinicians collaborate for data collection and multiple usage

Fig. 2

Standard Operating Procedures (SOPs) of the NMD Registry. 1. Individuals living with a NMD condition register their personal data and may fill in dedicated surveys or Patient Reported Outcomes (PROs). Filling in the personal data triggers the generation of a pseudonimysation code (ID), which will be attached to any data thereafter collected. Subjects select a preferred clinical centre if required by the specific registry. 2. Physicians collect and validate the medical data. 3. The Scientific Coordinator/Curator supervise the registry activity, and access data for final validation and data analysis. 4. Policies are in place for data usage and sharing

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Orphanet Journal of Rare Diseases

ISSN: 1750-1172