"...One of our
responsibilities as physicians caring for patients with Congenital
is to know the results of the treatment that we recommend..."
The initial aim of collecting data on the outcomes of Congenital Heart Surgery procedures across Europe was to make possible comparison of results and definition of mortality and morbidity, risk factors as well as targeting research activities. This requires a good quality data obtained on a large scale from numerous European congenital surgical cardiothoracic units and data validation and verification.
Such a data collection should allow risk stratification and help define optimal surgical treatment for certain subsets of patients exposed to incremental mortality and morbidity risk factors.
It is hoped that this also will result in improved early and late survival as well as the quality of life of surgically treated patients with Congenital Heart Disease across Europe.
Further goal of data collection is to enable predictive statistical analysis and comparison of results according to pathologies and procedures, from centers and countries will help to define official European standards available for health care organizations, media and legal assistance.
The European Congenital Heart Surgeons Foundation (Association since 2003) established in 1992, created the European Congenital Heart Defects Database (ECHDD), precursor of today’s EACTS Congenital Database.
The ECHDD was supervised by Martin Elliott and based at the Great Ormond Street Hospital For Sick Children, London, UK.
In 1998 the ECHDD was moved to, for legal and logistical reasons, the Department of Cardio-thoracic Surgery, Children’s Memorial Health Institute, Warsaw, Poland under responsibility of Bohdan Maruszewski.
Simultaneously since 1994 the substantial amount of work was done within the European Association for Cardio-Thoracic Surgery (EACTS) on establishing the EACTS Database named European Cardiothoracic Surgical Registry.
In September 1999 during EACTS Annual Meeting in Glasgow the final decision was made that ECHDD would become a part of the EACTS Database Project. At the same meeting an International Nomenclature for Congenital Heart Surgery was officially adopted; this was the outcome of one year work of the International Nomenclature and Database Committees for Congenital Heart Disease of both EACTS and the american Society of Thoracic Surgeons (STS).
Over the course of eight meetings at several venues on both sides of the Atlantic, in 1998 and 1999, an International Nomenclature and Database Committee met with 36 experts from the membership of the EACTS, STS, AATS, AHA associated surgeons and cardiologists from the United States, Canada, Australia and Europe.
The resulting the International Nomenclature for Congenital Heart Surgery including the Minimum Data Set of 21 items and the lists of 150 Diagnoses, 200 Procedures, 32 Complications, as well as 28 extra cardiac anomalies and 17 preoperative risk factors.
This International Language for CHD fulfills the following expectations and requirements:
The comprehensive data set that includes all predicted variables is detailed enough to generate risk stratification analysis. The Minimum Data Set includes the “short lists” that would create an essential data set mandatory for transfer and analysis of the information, and it is necessary for evaluation and the comparison of outcomes and trends.
Access to the Database - software, continued support and reports – is free of charge and available via Internet for all cardiothoracic units in Europe and worldwide.
No personal data contained in the ECHSA Congenital Database is accessible by an individual or institution. Only surgeons and centers know their own identities and those of their patients. Patient’s personal data are not transmitted at all and patient identification can be replaced with another number, before transmission to the Database.