European Platform on Rare Disease Registration

Overview

The EUROCAT Data Management Software (DMS) is a specially designed program for European surveillance of congenital anomalies.

The program is available for all full, associate and affiliate EUROCAT member registries. All users must conform to EUROCAT guidelines and instructions for transmitting data (EUROCAT Guide 1.5).

Use of the DMS is also authorized for congenital anomaly registries that are not members of the EUROCAT network, if the data are collected according to the EUROCAT specifications. To request access to the DMS please contact the Central Registry at JRC-EUROCAT@ec.europa.eu

Key Features

The EUROCAT DMS has many features which enable effective epidemiological surveillance including:

Database management functions such as data validation and duplicate case checking.
Reporting prevalence rates of congenital anomalies.
Statistical monitoring of clusters and time trends.

The database management functions are essential for the collection of accurate standardized data from all of the participating registries. Data validation routines enable data checks to be carried out locally, before transmission of the data to the JRC-EUROCAT Central Registry.

The report function creates output tables/reports presenting prevalence rates for EUROCAT congenital anomaly subgroups both including chromosomal anomalies and excluding chromosomal anomalies or for user-defined congenital anomaly subgroups. Depending on the type of table selected, users can obtain total prevalence (livebirth, fetal death, termination of pregnancy), birth prevalence (livebirth, fetal death) or livebirth prevalence for the specified congenital anomaly and time period.

Statistical monitoring in DMS allows users to run clusters and trends tests over time. Scan methods are used to detect clusters, which can be based on estimated date of conception or on date of birth. Methodology is explained in the EUROCAT Statistical Monitoring Protocol.

DMS user guide

The DMS user manual provides detailed guidance on how to use the EUROCAT DMS. You can also access specific guidance on a part of the software by clicking on one of the links below.

EUROCAT Data Management Software (DMS)

Overview

Key Features

DMS user guide

0. DMS setup

I. Manage data

II. Import/Export

III. Analyse data

IV. Data configuration

V. System configuration