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Fig. 3 | Orphanet Journal of Rare Diseases

Fig. 3

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

Fig. 3

Registry implementation steps. DMD and SMA registries did not undergo an observational study stage. The CMT registry has had two components, a long term registry database (ongoing) and a focused observational study based on Patient Reported Outcomes (PROs) and surveys (2014–2017). The MGSD, SBMA and TTR-FAP registries have been developed as observational studies and are now progressing into the stage of long-term registries

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Orphanet Journal of Rare Diseases

ISSN: 1750-1172