Epidemiological projects

Euripides Registry

Background

The implantation of CRT and ICD devices is an established form of treatment for adults with acquired heart disease. Indications for device implantation are clearly defined and supported by large multi-centre trials. However, in paediatric and adult patients with congenital heart defects we are still lacking patient cohorts in whom indication for CRT and/or ICD is clearly defined. As a consequence, CRT and ICD therapy are still rarely provided to children and adults with congenital heart defects. Furthermore, technical problems due to cardiovascular abnormalities and the often smaller size of the heart require individually modified implantation techniques. In order to rapidly gain detailed knowledge that will enable CRT and ICD therapy to be optimised for this group of patients, scientists and doctors need to work together on an international scale.

Objectives

The aim of the Euripides Registry is to find suitably adapted indications and implantation techniques for children and adults with congenital heart defects. Many of these paediatric and adult patients do not necessarily fall within the scope of predefined (adult) guidelines. The Euripides Registry is intended to demonstrate who of these patients would benefit from an ICD or CRT device, and what future treatment options might be possible. It offers an opportunity to carry out large-scale investigations and will provide answers to many important questions concerning CRT and ICD therapy.

Structure

The Euripides Registry is a joint project by the AEPC working group on “Cardiac Dysrhythmias and Electrophysiology“ and the ESC working group for adults with congenital heart defects (GUCH WG). Through this partnership, it will be possible to include both paediatric and adult patients with congenital heart defects in the Euripides Registry, without requiring the former to enroll again when they reach adulthood. The Euripides Registry is a Web-based follow-up database, combining data on implants and annual follow-up data on therapies with ICD, ICD-CRT and CRT devices. The database is managed by a steering committee, which reports to the AEPC and ESC and provides specialist advice. Any person (centre) who enters data in the database may also apply to use these data for research purposes.

  • AEPC
  • ESC

Recruitment of patients

Join us!

Help to drive forward the research effort for children and adults with congenital heart defects in need of an ICD or CRT implant. Please contact the database administrator euripides(at)kompetenznetz-ahf.de, who will provide you with a user name, password, and instructions on how to log in to the Euripides Registry. You will be asked to supply the name of your institution and your place of residence. Entries to the database require the prior consent of the patient or the patient’s parents. Ethical approval aplication form and informed consent forms are available at this web page for download and may be modified according to institutional ethical policy. Each patient is assigned a unique ID number that enables the recorded patient data to be correlated with the patient and allows follow-up examinations to be performed regardless of the centre where this takes place.

Project documents

Document Date File Author
Patient Identification Help 31.08.2007 PDF / 70 KB KN AHF
CRT PreImplant Data Help 31.08.2007 PDF / 255 KB KN AHF
CRT Implant Data Help 31.08.2007 PDF / 256 KB KN AHF
CRT Yearly FollowUp Help 31.08.2007 PDF / 252 KB KN AHF
CRT Revision Data Help 31.08.2007 PDF / 187 KB KN AHF
CRT Termination Data Help 31.08.2007 PDF / 208 KB KN AHF
Ethical Approval 28.10.2008 PDF / 56 KB KN AHF
Patient Info/Consent Form Adolescents 28.10.2008 DOC / 88 KB KN AHF
Patient Info/Consent Form Adults and Parents 28.10.2008 DOC / 96 KB KN AHF

Guidelines

1. ECG and Arrhythmias

AHA/ACCF/HRS 2007 Recommendations for the Standardization and Interpretation of the Electrocardiogram
J Am Coll Cardiol 2007; 49: 1109–27
Part I
Part II

ACC/AHA/ESC 2006 Guidelines for Management of Patients With Ventricular Arrhythmias and the Prevention of Sudden Cardiac Death
J Am Coll Cardiol 2006; 48: 1064-1108
Guideline
Executive Summary
Pocket Guide  
Slide Set 

ACC/AHA/ESC 2003 Guidelines for the Management of  Patients with Supraventricular Arrhythmias
J Am Coll Cardiol 2003; 42: 1493–531
Guideline   
Executive Summary

ACC/ESC 2003 Clinical Expert Consensus Document on Hypertrophic Cardiomyopathy
J Am Coll Cardiol 2003; 42: 000-000
Consensus Document 

ESC 2002 Guidelines for the interpretation of the Neonatal Electrocardiogram
Eur Heart J 2002; 23: 1329–1344
Task Force Report
Slide set 

2. Electrophysiologic testing

ACC/AHA/HRS 2006 Key Data Elements and Definitions for Electrophysiological Studies and Procedures: A Report of the American College of Cardiology/American Heart Association Task Force on Clinical Data Standards
J Am Coll Cardiol 2006; 48: 2360-96
Data Standard

ACC/AHA 2006 Update of the Clinical Competence Statement On Invasive Electrophysiology Studies, Catheter Ablation, and Cardioversion
J Am Coll Cardiol 2006; 48: 1503–17
Clinical Competence Statement 

HRS 2006 Task Force 6: Training in Specialized Electrophysiology Cardiac Pacing  and Arrhytmia Management
J Am Coll Cardiol 2006; 47: 904–910
Task Force

3. Antiarrhythmia Devices

ACC/AHA/HRS 2008 Guidelines for Device-Based Therapy of Cardiac Rhythm Abnormalities
J Am Coll Cardiol 2008; 51; e1-e62
Full Text
Executive Summary
Pocket Guideline PDF 
Slide Set 

ACC/AHA/HRS/PACES 2008 Clinical Competency Statement: Training pathways for implantation of cardioverter-defibrillators and cardiac resynchronization therapy devices in pediatric and congenital heart patients
Heart Rhythm 2008; 5:  926-933

HRS/EHRA 2008 Expert Consensus on the Monitoring of Cardiovascular Implantable Electronic Devices: Description of Techniques, Indications, Personell, Frequency and Ethical Considerations
Europace 2008; 10: 707–725
Full Text

Magnetic resonance imaging in individuals with cardiovascular implantable electronic devices
Europace 2008; 10: 336-346; doi:10.1093/europace/eun021
Position Paper

ESC/EHRA 2007 Guidelines for Cardiac Pacing and Cardiac Resynchronization Therapy
Eur Heart J 2007; 28: 2256 – 2295
Full text
Slide Set 

ACC/AHA/HRS 2005 Patient Selection for Cardiac Resynchronization Therapy Circulation 2005;111;2146-2150
Full text

NASPE 2003 Training Requirements for Cardiac Implantable Electronic Devices: Selection, Implantation, and Follow-Up
Pacing and Clinical Electrophysiology, Volume 26, Number 7, July 2003 , pp. 1556-1562(7)

ACC/AHA/NASPE 2002 Guideline Update for Implantation of Cardiac Pacemakers and Antiarrhythmia Devices
Circulation 2002;106: 2145-2161
Summary Article

4. Heart failure

ESC 2008 Guidelines for Diagnosis and Treatment of Acute and Chronic Heart Failure Eur Heart J 2008; 29: 2388-2442
Full Text  
Corrigendum  
Slideset   

ACC/AHA 2005 Guideline Update for the Diagnosis and Management of Chronic Heart Failure in the Adult
J Am Coll Cardiol 2005; 46: 1116-43
Guideline
Summary Article
Pocket Guideline  
Slide Set 

5. Congenital heart disease

ACC/AHA 2008 Guidelines for the Management of Adults With Congenital Heart Disease
J Am Coll Cardiol 2008; 52: e143-e263
Full Text
Executive Summary 
Slide Set  

Literature

Dokument Datum Datei Autor
ICD literature 20.08.2009 PDF / 88 KB KN AHF
CRT literature 20.08.2009 PDF / 96 KB KN AHF

Downloads

Document Date File Author
Flyer Euripides Registry (English) 21.05.2007 PDF / 312 KB KN AHF

Any questions?

Please contact one of the founders of the Registry:
euripides(at)kompetenznetz-ahf.de

Euripides Advisory Board

PD Dr. med. Urs Bauersfeld

Kinderherzzentrum Zurich (Switzerland)
Abteilung Kinderkardiologie und angeborene Herzerkrankungen

Phone: +41 44 266 71 11
Fax: +41 44 266 79 81
E-mail: urs.bauersfeld(at)kispi.uzh.ch

Dr. med. Joachim Hebe

Herzzentrum Bremen
Zentrum für Elektrophysiologie

Phone: +49 421 8791789
Fax: +49 421 8791799
E-mail: j.hebe(at)online.de

Prof. MU Dr. Jan Janousek, PhD

Kardiocentrum and Cardiovascular Research Center
University Hospital Motol

Tel.: +42 0224432901
E-Mail: jan.janousek(at)lfmotol.cuni.cz

PD Dr. med. Christof Kolb

Deutsches Herzzentrum München
Klinik für Herz- und Kreislauferkrankungen

Phone: +49 89 12182020
Fax: +49 89 12181533
E-mail: kolb(at)dhm.mhn.de

Dr. med. Andreas Pflaumer

Royal Children's Hospital Melbourne

Tel.: +61 3 9345 5713
Fax: +61 3 9345 6001
E-Mail: andreas.pflaumer(at)rch.org.au