Guidelines for data registration

Guideline Overview

EUROCAT issued written guidelines for the registration of congenital anomalies, which are available on the present webpage. The currently used EUROCAT Guide 1.5 is a document that contains information and detailed instructions on:

1. data transmission from registries to the Central Registry;
2. coding and classification;
3. calculation and interpretation of prevalence rates;
4. registry descriptions;
5. data quality indicators;
6. data protection and access to data.

Guide 1.5 is a revision of Guide 1.4 and includes updated EUROCAT subgroups and Multiple Congenital Anomaly (MCA) algorithm. The new classification into EUROCAT subgroups applies to all cases in the EUROCAT Central Database and has been in use from June 2022.

Guide 1.4 was a revision of Guide 1.3 for use for all births from 1^st January 2013. Guide 1.3 should continue to be used for births between 1^st January 2005 and 31^st December 2012. Guide 1.2 should continue to be used for births up to 31^st December 2004.

Guide 1.5 is compatible with the EUROCAT Data Management Software (DMS).

EUROCAT Guide 1.5

Chapter 1 - Aims and Objectives of EUROCAT

Chapter 2 - Data Transmission

Section 2.1      General Instructions for Data Transmission
Section 2.2.1   Summary of Variables (version 31.05.2022)
Section 2.2.2   Coding Instructions (version 20.02.2025)
Section 2.2.3   DMS Derived Variables (version 23.10.2023)
Section 2.2.4   Recommended Local Variables (version 31.05.2022)
Section 2.3     Template for Associate Member Registry Data Transmission (version 31.05.2022)
Section 2.4     Template for Denominator Data (version 31.05.2022)
Section 2.5      Data Validation Routines

Chapter 3 - Coding and Classification

Section 3.1     Overview of EUROCAT Approach to Coding and Classification (version 31.05.2022)
Section 3.2     Minor Anomalies for Exclusion (version 17.02.2025)
Section 3.3     EUROCAT Subgroups of Congenital Anomalies (Version 23.10.2023)
Section 3.4     Multiple Congenital Anomaly Algorithm (Version 17.11.2022)
Section 3.5     Detailed Congenital Anomaly Coding Guidelines (version 08.10.2024)
Section 3.6     EUROCAT Description of the Congenital Anomaly Subgroups (version 31.05.2022)

Chapter 4 - Prevalence Calculation and Interpretation

Tool to calculate prevalence, proportions and 95% confidence intervals

Chapter 5 - Registry Description and Data Quality Indicators

Section 5.1     Template for Registry Description (version 31.05.2022)
Section 5.2     Definition of Data Quality Indicators (version 19.11.2024)

Chapter 6 - Data Protection, Security and Access to Data

 

EUROCAT Syndrome Guide

 

EUROCAT Syndrome Guide: Definition and Coding of Syndromes  (version July 2017)

English (1.8 MB - PDF - 137 pages)

Download(1.8 MB - PDF - 137 pages)

 

Guide 1.4 (no longer in use since June 2022)

 

Complete EUROCAT Guide 1.4 and Reference Documents (version 22.11.2021)

English (3 MB - PDF - 167 pages)

Download(3 MB - PDF - 167 pages)

Malformation Coding Guidelines

EUROCAT SYNDROME GUIDE: Definition and Coding of Syndromes (revised 2017).

Coding of EUROCAT Subgroups of Congenital Anomalies (Chapter 3.3, Guide 1.4) (2013). The older version can still be accessed here.
Minor Anomalies for Exclusion (Chapter 3.2, Guide 1.4) (New List of Minor Anomalies for Use from Birth Year 2005).
Clinical Definitions of Subgroups (Chapter 3.6, Guide 1.4) (2013). The older version can still be accessed by clicking here.
Detailed Congenital Anomaly Coding Guidelines (Chapter 3.5, Guide 1.4)(27.10.2016).
Q-Chapters (with BPA Extension) - updated 23 June 2008.
EUROCAT Chromosomal Coding July 2011.
EUROCAT Guide 6: Definition and Coding of Syndromes (Revised 2008).
EUROCAT Guide 3: For the Description and Classfiication of Congenital Limb Defects.
Statement of EUROCAT and ICBDSR on ICD11 (June 2009).

Previous Coding Guides and Instruction Manuals

Please note that all the below mentioned publications are no longer in current use:

Guide 1.2 ICD9 (with BPA Extension).
Complete EUROCAT Guide 1.4 and Reference Documents (version 28.12.18).
List of Minor Anomalies for Exclusion up to Birth Year 2004.
EUROCAT Guide 1.2: Instruction for the Registration of Congenital Anomalies (2002).
Section 3.2 Minor Anomalies for Exclusion (version 11/18)
EUROCAT Guide 5: Classification and Coding of Congenital Anomalies (1990).
EUROCAT Guide 1: For the Registration of Congenital Anomalies (1984).
EUROCAT Guide 1.1: Instruction for the Registration of Congenital Anomalies (1990).
EUROCAT Guidelines for the Registration of Congenital Abnormalities and Multiple Births (1980).
EUROCAT Guide to Eponyms and Syndromes (1979).
Coding of EUROCAT Subgroups of Congenital Anomalies (Chapter 3.3, Guide 1.3) (Definition of New EUROCAT Subgroups - February 2007).