EUROCAT Data Management Program EDMP

What is EDMP?  Designed for EUROCAT by BioMedical Computing Limited, East Sussex  Written in Access  Designed as a flexible tool to assist in the collection, management, reporting and analysis of congenital anomaly data

Would EDMP be useful to you?  Are you interested in membership of EUROCAT? Please see the website for different membership categories  Are you able to follow the guidelines as described in Guide 1.3?  Please note that there is not an automatic malformation coding system  Malformations are coded to ICD10 with BPA one digit extension. Anomalies of interest to EUROCAT are those with codes in the Q chapter of ICD10 and a very limited set of conditions coded outside the Q chapter

Coding of EUROCAT Subgroups EUROCAT subgroup ICD10-BPAICD9-BPAComments All casesQ-chapter, D215, D821, D1810, P350, P351, P371 74, 75, 27910, 2281, 7710, 7711, Nervous systemQ00, Q01, Q02, Q03, Q04, Q05, Q06, Q07 740, 741, 742 Neural Tube DefectsQ00, Q01, Q05740, 741, 7420 Anencephalus and similar Q00740 EncephaloceleQ017420Exclude if assoc. with anencephalus Spina BifidaQ05741Exclude if assoc. with anencephalus or encephalocele ….Continued for 95 subgroups Ref: EUROCAT Guide 1.3, Chapter 3.3

Main Menu

Dataset Choices  Core data – essential for all EUROCAT registries to collect  Non-core data – not mandatory to collect Local variables – not sent to EUROCAT User specific variables – allows flexibility

Add/Edit Cases There are a number of data entry screens, subdivided to collect information on:  Baby & Mother  Malformations  Exposure  Family History & Sociodemographic  Local Variables

View a Case There are a number of ways to retrieve the case of interest:  Local ID number if known  Date of birth  Place of birth etc As the name suggests you can not edit data in this mode

Print  Shows all the information held on a case  Same format as entry screens

Importing Data  You can use EDMP as your sole data collection tool  Or you may wish to keep your existing data collection system  However Central Registry can only accept data that has been verified by use of EDMP  Variable names need to match EUROCAT guidelines (see chapter 2.2.1a of the EUROCAT User Guide 1.3)

Error Log EDMP has a number of validation tools to help ensure data is as accurate as possible  After import, run the Error Log  This highlights any errors which can then be checked

Data Validation Each time you enter a new case, Central Registry recommends the use of:  ‘Duplicate Check’ button  ‘Validation’ button

Results of Validation

Reports You have a wide range of reporting functions  Web Site Style Tables  Reports by Criteria: Frequencies List – Case ID & Summary List – Malformation Codes By Case Export All or Selected Variables

Example of Website Style Report Showing Prevalence Rates Per 10,000 Births Excluding Chromosomal Anomaly Subgroup LB (n)FD (n)TOP (n)LB+FD+ TOP (n) LB+FD+TOP (rate) LB+FD+ TOP(n) LB+FD+TOP (rate) All anomalies Nervous System Neural Tube Defects Anencephalus & similar ….Continued for 95 subgroups

Exporting Data  Central registry only accepts data that has been verified by EDMP and data exported in the form of a.csv file  Because of changes in fields of information collected, data before 2005 has to be exported separately from 2005 onwards

Denominators  To allow EDMP to calculate prevalence rates, the denominators for the registry area have to be entered.  Live births  Stillbirths  Total births

Statistical Surveillance  This allows you to scan your data for trends and clusters  You can specify the time period  Output can be for all anomaly subgroups or an individual subgroup  A detailed protocol is available to members on EUROCAT website

Example of Statistical Surveillance Output to Excel

Results of Trend Test Analyses

Results of the Cluster Monitoring

Graphical Representation of Trend Surveillance

System Menu  A range of administrative functions  Data location – this shows you the directory where your EDMP data file is stored. It is vital to regularly back up this file so that data is not lost  Users & Passwords – this allows you to set passwords and different levels of access for different users

Assistance  Training can be provided at Central Registry  Workshops are held annually at the EUROCAT conference  Regular updates to the software are provided