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 1st January 2013. Guide 1.3 should continue to be used for births between 1st January 2005 and 31st December 2012. Guide 1.2 should continue to be used for births up to 31st 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 31.05.2022)
Section 2.2.3   DMS Derived Variables (version 27.10.2016)
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 31.05.2022)
Section 3.3     EUROCAT Subgroups of Congenital Anomalies (Version 2022; implemented in EUROCAT DMS May 2022, used for website prevalence tables from June 2022) (version 31.05.2022)
Section 3.4     Multiple Congenital Anomaly Algorithm (under validation, available soon - for previous version of the MCA algorithm see Guide 1.4)
Section 3.5     Detailed Congenital Anomaly Coding Guidelines (version 31.05.2022)
Section 3.6     EUROCAT Description of the Congenital Anomaly Subgroups (vs.31.05.2022)

Chapter 4 - Prevalence Calculation and Interpretation

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

Chapter 6 - Data Protection, Security and Access to Data

 

EUROCAT Syndrome Guide

 

 

Guide 1.4 (no longer in use since June 2022)

 

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).