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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”