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The
long way from nomenclature to collection of validated data at the EACTS
François Lacour-Gayet, Bohdan Maruszewski, Constantine Mavroudis, Jeffrey P. Jacobs
and Martin J. Elliott
Eur J Cardiothorac Surg 2000;18:128-135
The online version of this article, along with updated information and services, is
located on the World Wide Web at:
http://ejcts.ctsnetjournals.org/cgi/content/full/18/2/128
The European Journal of Cardio-thoracic Surgery is the official Journal of the European Association
for Cardio-thoracic Surgery and the European Society of Thoracic Surgeons. Copyright © 2000 by
European Association for Cardio-Thoracic Surgery. Published by Elsevier. All rights reserved. Print
ISSN: 1010-7940.
Summary
An International Nomenclature for Congenital Heart Surgery was of®cially adopted at the Annual Meeting of the EACTS in Glasgow, UK
on September 6, 1999. This nomenclature was achieved following 1 year's work of the International Nomenclature and Data Base Committee
for Congenital Heart Surgery of the Society of Thoracic Surgeons. This international group included members from the STS, AATS, AHA
and EACTS and associated surgeons and cardiologists from United States, Canada, Australia and Europe. The Nomenclature includes a
minimal data set of 21 items and lists of 150 diagnoses, 200 procedures, 32 complications and 28 extra cardiac anomalies and preoperative
risk factors. It will serve as a basis for the Pediatric European Cardiac Surgical Registry (http://www.pediatric.ecsur.org). The outcome of
such an International Nomenclature represents an important event for the medical community in charge of treating patients with congenital
heart diseases. It will allow scienti®c exchanges on an international scale and promote multicenter evaluation of congenital heart surgery.
Nevertheless, this Nomenclature is only the ®rst step. Further collection of validated data at the Pediatric ECSUR Data Base requires ethical
belief, time consumption and ®nancial resources. Comparison of results, according to pathologies, across centers and countries will help
de®ne, in the future, of®cial European standards of Quality of Care available for health care organizations, public scrutiny and governmental
agencies. q 2000 Elsevier Science B.V. All rights reserved.
2. The Second International Nomenclature Conference for a list of 150 diagnoses (Table 2);
Pediatric Cardiac Surgery, San Antonio, TX, USA, Janu- a list of 200 procedures (Table 3);
ary 23, 1999; a list of 32 complications (Table 4);
3. The Spring Meeting of the European Congenital Heart a list of 28 extra cardiac anomalies and preoperative risk
Surgeons Foundation, Rome, Italy, April 10, 1999; factors (Table 5).
4. The Third International Nomenclature Conference for
The period of data collection for the minimum data set
Pediatric Cardiac Surgery, New Orleans, LA, USA,
will end when both of the following two criteria have been
April 23, 1999;
satis®ed:
5. The International Nomenclature for Pediatric Cardiac
Surgery Subcommittee Meeting, Orlando, FL, USA, the patient has been discharged from the hospital after the
August 14±15, 1999; operation;
6. The Congenital Heart Surgery Business Meeting of the 30 days have passed since the operation.
European Association for Cardiothoracic Surgery, 13th
Operative mortality designates any death occurring
Annual Meeting of the EACTS, Glasgow, Scotland, UK,
during the period of data collection, regardless of whether
September 5±8, 1999;
or not the mortality is related to surgery.
7. The Subcommittee Meeting of the International Nomen-
clature for Pediatric Cardiac Surgery Advisory Editorial
Committee at the 9th Annual Farouk S. Idriss, M.D. 4. The Pediatric European Cardiac Surgical Registry
Lecture, Chicago, IL, USA, October 1±2, 1999. (ECSUR)
The aim of this cooperative committee was to create an
The CHD Committee of the EACTS has decided in Glas-
International Language for CHD that ful®lls the following
gow that the Congenital Heart Surgery Data Base will be
requirements:
hosted by Dr Bohdan Maruszewski in Warsaw, Poland,
being simple, limited and exclusive; under the authority of the Data Base Committee of the
complete; EACTS in compliance with the requirement of the
usable by surgeons and cardiologists; ECSUR project. The EACTS pediatric data base is named
including: cardiac surgery, lung surgery, ECMO proce- the Pediatric European Cardiac Surgical Registry (ECSUR)
dures, arrhythmia procedures; and is available at http://www.pediatric.ecsur.org. A simpli-
respecting all published classi®cation; ®ed Data Base software using the new International Nomen-
providing synonyms for similar items. clature, that has been developed under the auspices of the
ECHSF (Appendix B), can be downloaded free of charge at
Participants of this Committee have produced an article on
http://www.pediatric.ecsur.org since December 1999 so that
an assigned issue covering all the pathologies mentioned.
the data collection can start in 2000. European centers
These articles, published in a Supplement of Annals of
performing pediatric cardiac surgery are expected to regis-
Thoracic Surgery (April, 2000) [1], include analyses of all
ter to the ECSUR pediatric program and send their data.
existing anatomic classi®cations and nomenclature systems
As The Pediatric ECSUR Data Base is equipped with a
for the comprehensive data set and the minimum data set.
widely compatible system, other software respecting the Inter-
The comprehensive data set includes all the imagined vari-
national Nomenclature can also be used, provided that it
ables, in a hierarchical scheme, which are detailed enough to
strictly respects the minimal data set of the International
generate risk strati®cation analyses. The minimum data set
Nomenclature as it appears at the Pediatric ECSUR web site.
will include short lists that would create an essential data
set, which would be mandatory for data sharing and would
lend itself to basic interpretation of trends. 5. Mapping with other existing coding
The EACTS has decided to use for its data base the mini-
mum data set which, in most cases, stems from the ®rst or The Association for European Pediatric Cardiology
second level of hierarchy of the STS comprehensive data (AEPC) has published its own coding [2]. A joint committee
set. This minimum data set and short lists form the Interna- from the EACTS and the AEPC will develop a mapping
tional Nomenclature for CHD Surgery. system to allow connections between the two data bases.