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” |