1. EUROCAT Data Management Program EDMP

2. 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

3. Would EDMP be useful to you?  Are you interested in membership of EUROCAT? Please see the website for different membership categories www.eurocat.ulster.ac.uk/memberreg  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

4. Coding of EUROCAT Subgroups EUROCAT subgroup ICD10-BPAICD9-BPAComments All casesQ-chapter, D215, D821, D1810, P350, P351, P371 74, 75, 27910, 2281, 7710, 7711, 77121 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

5. Main Menu

6. 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

7. 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

8. 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

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

10. 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)

11. 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

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

13. Results of Validation

14. 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

15. 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 anomalies486798591222.01518194.59 Nervous System183295018.784416.53 Neural Tube Defects 3116207.51197.14 Anencephalus & similar 00772.637 ….Continued for 95 subgroups

16. 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

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

18. 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

20. Example of Statistical Surveillance Output to Excel

21. Results of Trend Test Analyses

22. Results of the Cluster Monitoring

23. Graphical Representation of Trend Surveillance

24. 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

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