Table 1 Main characteristics of Clinical-Genetic Research, Treatment, and Public Health Registries according to the most informative variables emerged after the random forest method. Variables reported in the table characterize most of the registries of each class.
From: Characterization and classification of Rare Disease Registries by using exploratory data analyses
| Variables | Public Health Registries | Treatment Registries | Clinical-Genetic research Registries |
| Aims |
- epidemiologic research - disease surveillance - healthcare services planning |
- treatment evaluation - treatment monitoring |
- clinical research - genetic -natural history of the disease |
| Collected data | socio-demographic |
- clinical - medications, devices and health services - genetic - family history - date of the patient death - patient-reported outcomes - anthropometric info |
- clinical - genetic - family history |
| Coding system | ICD | No coding system or own code | No coding system or own code |
| Services requested to a EU platform | “Quality control systems” | “Facilitated access to useful data sources” | “Model documents” |
