Guideline Overview

The EUROCAT Guide 1.4 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 1.4 is 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 1.4 is compatible with the EUROCAT Data Management Program (EDMP v6.05 26/03/13 onwards).

Guide 1.4

Complete EUROCAT Guide 1.4 and Reference Documents (version 01.12.2020)
English (3 MB - PDF - 166 pages)
Download(3 MB - PDF - 166 pages)

Selected sections

Chapter 1 - Aims and Objectives of EUROCAT

Chapter 2 - Data Transmission

Section 2.1 General Instructions for Data Transmission
Section 2.2.1a Summary of Variables (version 01.12.2020)
Section 2.2.1b Coding Instructions (version 01.12.2020)
Section 2.2.2 EDMP Derived Variables (version 27.10.2016)
Section 2.2.3 Recommended Local Variables
Section 2.2.4 Template for Associate Member Registry Data Transmission (version 27.10.2016)
Section 2.3 Template for Denominator Data
Section 2.4 EUROCAT Data Management Program (EDMP) Instruction
Section 2.5 Data Validation Routines

Chapter 3 - Coding and Classification

Section 3.1 Overview of EUROCAT Approach to Coding and Classification
Section 3.2 Minor Anomalies for Exclusion (version 23.09.2020)
Section 3.3 EUROCAT Subgroups of Congenital Anomalies (Version 2020; implemented in EUROCAT DMS February 2020, used for website prevalence tables from September 2020) (vs.23.09.2020)
Section 3.4 Multiple Congenital Anomaly Algorithm (vs.19.11.14)
Section 3.5 Detailed Congenital Anomaly Coding Guidelines (version 15.11.19)
Section 3.6 EUROCAT Description of the Congenital Anomaly Subgroups (vs.19.11.14)

Chapter 4 - Prevalence Rates

Section 4.1 Calculation of Prevalence Rates
Section 4.2 Interpretation of Prevalence Rates

Chapter 5 - Registry Description and Data Quality Indicators

Section 5.1 Template for Registry Description (version 27.10.16)
Section 5.2 Registry Description Questionnaire
Section 5.3 Definition of Data Quality Indicators

Chapter 6 - Data Protection and Access to Data (chapter under revision)

Section 6.1 EUROCAT Central Database (under revision)
Section 6.2 Release of Data (under revision)
Section 6.3 Guidelines on Security and Confidentiality for Staff Working in EUROCAT Central Registry (under revision)
Section 6.4 Data Protection Principles (under revision)

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).