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The development of an international surgical registry: the ECSUR project. The European Cardiac Surgical Registry
1Department of Cardiac Surgery, Hammersmith Hospital, London, UK. rkh.wyse@rpms.ac.uk
Insights
The European Cardiac SUrgical Registry (ECSUR) was established to collect patient data for cardiac and thoracic surgery. It now includes data from 98 centers in 30 countries, aiming for global dataset unification.
Area of Science:
- Cardiovascular Surgery
- Thoracic Surgery
- Medical Registries
Background:
- Cardiac surgery is pioneering the establishment of a major international patient-by-patient registry.
- The lack of existing rules or guidelines presents unique challenges in defining registry scope and boundaries.
Purpose of the Study:
- To establish the European Cardiac SUrgical Registry (ECSUR) for collecting patient data across Europe.
- To develop a framework for multinational data collection in adult cardiac, paediatric cardiac, and thoracic surgery.
Main Methods:
- The EACTS database committee initiated the European Cardiac SUrgical Registry (ECSUR).
- Data collection was planned across three surgical areas: adult cardiac, paediatric cardiac, and thoracic surgery.
- Multinational data collection commenced in adult cardiac surgery.
Main Results:
- ECSUR received data from 98 centers in 30 countries within its first year.
- Approximately 100,000 patient records were collected.
- Data sharing agreements were established with multiple countries, including three national registries contributing to ECSUR.
Conclusions:
- ECSUR has been successfully established and is operational, with multinational data collection underway.
- The project has expanded to a global perspective through a joint European and US initiative.
- The initiative focuses on unifying international datasets for adult cardiac, paediatric cardiac, and thoracic surgery.
Objectives:
Cardiac surgery is the first of any therapeutic discipline to attempt to establish a major international registry on a patient-by-patient basis. Being the first necessarily imposes a challenge since no rules or guidelines exist. Possibilities and boundaries must be identified.
Methods:
The EACTS database committee established ECSUR (The European Cardiac SUrgical Registry) with the aim of collecting patient-by-patient information from centres across Europe. It was decided to collect patient data in three areas; adult cardiac surgery, paediatric cardiac surgery and thoracic surgery. Currently, these three areas are in different stages of development, with multinational data collection now having already commenced in adult cardiac surgery.
Results:
After just over a year of data collection ECSUR has now received data from 98 centres in 30 countries, encompassing approximately 100,000 patients. Three national cardiac surgical registries currently send their data to ECSUR, and agreement has been reached with three other countries for prospective data sharing during 1999.
Conclusion:
This paper describes how ECSUR was established, the on-going status of the project, and how the project has now developed a global perspective through a joint European and US initiative to undertake international dataset unification for surgeons worldwide, by the definition of core adult cardiac, paediatric cardiac and thoracic surgical datasets.
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