World Society for Pediatric and Congenital Heart SurgeryCongenital Heart Surgery Databases Around the World: Do We Need a Global Database?
Introduction
The question posed in the title of this article is: “Congenital Heart Surgery Databases Around the World: Do We Need a Global Database?” The answer to this question is “Yes and No”!
Yes–we need to create a global database to track the outcomes of patients with pediatric and congenital heart disease.
No–we do not need to create a new “global database.” Instead, we need to create a platform that allows for the linkage of currently existing continental subspecialty databases (and continental subspecialty databases that might be created in the future) that will allow for the seamless sharing of multi-institutional, longitudinal data across temporal, geographical, and subspecialty boundaries. This “Global Federated Multispecialty Congenital Heart Disease Database” will not be a new database but will be a platform that effortlessly links multiple databases.
This review article will achieve the following objectives:
- (A)
Consider the current state of analysis of outcomes of treatments for patients with congenitally malformed hearts.1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28, 29, 30, 31, 32, 33, 34, 35, 36, 37, 38, 39, 40, 41, 42, 43, 44, 45, 46, 47, 48, 49, 50, 51, 52, 53, 54, 55, 56, 57, 58, 59, 60, 61, 62, 63, 64, 65, 66, 67, 68, 69, 70, 71, 72, 73, 74, 75, 76, 77, 78, 79, 80, 81, 82, 83, 84, 85, 86, 87, 88, 89, 90, 91, 92, 93, 94, 95, 96, 97, 98, 99, 100, 101, 102, 103, 104, 105, 106, 107, 108, 109, 110, 111, 112, 113, 114, 115, 116, 117, 118, 119, 120, 121, 122, 123, 124, 125, 126, 127, 128, 129, 130, 131, 132, 133, 134, 135, 136, 137, 138, 139, 140, 141, 142, 143, 144
- (B)
Present some principles that might make it possible to achieve life-long longitudinal monitoring and follow-up.84, 89, 90, 91, 92, 107, 125, 126, 143, 144
- (C)
Describe the rationale for the creation of a Global Federated Multispecialty Congenital Heart Disease Database.
- (D)
Propose a methodology for the creation of a Global Federated Multispecialty Congenital Heart Disease Database that is based on linking together currently existing databases without creating a new database.
Section snippets
The Current State of Analysis of Outcomes of Treatments for Patients With Congenitally Malformed Hearts
To perform meaningful multi-institutional analyses, any database must incorporate the following six essential elements:1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28, 29, 30, 31, 32, 33, 34, 35, 36, 37, 38, 39, 40, 41, 42, 43, 44, 45, 46, 47, 48, 49, 50, 51, 52, 53, 54, 55, 56, 57, 58, 59, 60, 61, 62, 63, 64, 65, 66, 67, 68, 69, 70, 71, 72, 73, 74, 75, 76, 77, 78, 79, 80, 81, 82, 83, 84, 85, 86, 87, 88, 89, 90, 91, 92, 93, 94, 95, 96, 97, 98
Life-Long Longitudinal Monitoring and Follow-Up
Standardizing long-term follow-up is the key to the future of the discipline, and it is as yet thoroughly undeveloped! The EACTS Congenital Heart Surgery Database and the STS Congenital Heart Surgery Database currently do not allow for long-term follow-up. At the present time, the period of collection of data for these databases ends when both of the following two criterions have been satisfied.74, 85
- (1)
The patient has been discharged from the hospital after the operation.
- (2)
Thirty days have passed
Rationale for the Creation of a Global Federated Multispecialty Congenital Heart Disease Database
We need to create a platform that allows for the linkage of currently existing continental subspecialty databases (and continental subspecialty databases that might be created in the future) that will allow for the seamless sharing of multi-institutional longitudinal data across temporal, geographical, and subspecialty boundaries. This “Global Federated Multispecialty Congenital Heart Disease Database” will not be a new database but will be a platform that effortlessly links multiple databases
Hypothesis
The creation of a Federated Multispecialty Congenital Heart Disease Database that links extant databases from pediatric cardiology, pediatric cardiac surgery, pediatric cardiac anesthesia, and pediatric critical care will create a platform for improving patient care, research, and teaching related to patients with congenital and pediatric cardiac disease.
Specific Aim 1
To create a Federated Multispecialty Congenital Heart Disease Database that links extant databases from pediatric cardiology, pediatric
Conclusions
The ultimate goal of those who established and currently use the EACTS Congenital Heart Surgery Database and the STS Congenital Heart Surgery Database is the capture of all of the cardiac surgical operations for pediatric and congenital cardiac disease performed in the United States, Canada, and Europe. Through collaboration with other international societies, the goal becomes the eventual capture of all cardiac surgical operations for pediatric and congenital cardiac disease performed in the
References (152)
- et al.
Ann Thorac Surg
(1999) - et al.
Consensus-based method for risk adjustment for surgery for congenital heart disease
J Thorac Cardiovasc Surg
(2002) - et al.
Congenital heart disease outcome analysis: methodology and rationale
J Thorac Cardiovasc Surg
(2002) - et al.
Virtues of a worldwide congenital heart surgery database
Semin Thorac Cardiovasc Surg Ped Card Surg Annu
(2002) - et al.
Practical experience with databases for congenital heart disease: a registry versus an academic database
Semin Thorac Cardiovasc Surg Ped Card Surg Annu
(2002) - et al.
The European Congenital Heart Defects Surgery Database experience: Pediatric European Cardiothoracic Surgical Registry of the European Association for Cardio-Thoracic Surgery
Semin Thorac Cardiovasc Surg Ped Card Surg Annu
(2002) Risk stratification theme for congenital heart surgery
Semin Thorac Cardiovasc Surg Ped Card Surg Annu
(2002)Software development, nomenclature schemes, and mapping strategies for an International Pediatric Cardiac Surgery Database System
Semin Thorac Cardiovasc Surg Ped Card Surg Annu
(2002)- et al.
Congenital Heart Surgery Nomenclature And Database Project: Update and proposed data harvest
Ann Thorac Surg
(2002) - et al.
Center-specific differences in mortality: preliminary analyses using the Risk Adjustment in Congenital Heart Surgery (RACHS-1) method
J Thorac Cardiovasc Surg
(2002)
Risk adjustment for congenital heart surgery: the RACHS-1 method
Semin Thorac Cardiovasc Surg Ped Card Surg Annu
The Aristotle score for congenital heart surgery
Semin Thorac Cardiovasc Surg Ped Card Surg Annu
Evaluation of quality of care for congenital heart disease
Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu
Initial application in the STS congenital database of complexity adjustment to evaluate surgical case mix and results
Ann Thorac Surg
Performance of surgery for congenital heart disease: shall we wait a generation or look for different statistics?
J Thorac Cardiovasc Surg
Current status of the European Association for Cardio-Thoracic Surgery and the Society of Thoracic Surgeons Congenital Heart Surgery Database
Ann Thorac Surg
Repair of truncus arteriosus and aortic arch interruption: outcome analysis
Ann Thorac Surg
What is operative mortality?Defining death in a surgical registry database: a report from the STS Congenital Database Task Force and the Joint EACTS-STS Congenital Database Committee
Ann Thorac Surg
Comprehensive Aristotle score: implications for the Norwood procedure
Ann Thorac Surg
Case complexity scores in congenital heart surgery: a comparative study of the Aristotle Basic Complexity score and the Risk Adjustment in Congenital Heart Surgery (RACHS-1) system
J Thorac Cardiovasc Surg
The need for an objective evaluation of morbidity in congenital heart surgery
Ann Thorac Surg
Evaluation of quality of care in congenital heart surgery: contribution of the Aristotle Complexity Score
Adv Pediatr
What is operative morbidity?Defining complications in a surgical registry database: a report from the STS Congenital Database Task Force and the Joint EACTS-STS Congenital Database Committee
Ann Thorac Surg
Accuracy of the Aristotle Basic Complexity Score for Classifying the Mortality and Morbidity Potential of Congenital Heart Surgery Procedures
Ann Thorac Surg
Cardiac surgery in infants with low birth weight is associated with increased mortality: analysis of the Society of Thoracic Surgeons Congenital Heart Database
J Thorac Cardiovasc Surg
Editorial: the rationale for incorporation of HIPAA compliant unique patient, surgeon, and hospital identifier fields in the STS database
Ann Thorac Surg
Data Analyses of the Society of Thoracic Surgeons National Congenital Cardiac Surgery Database, 1994-1997
The International Congenital Heart Surgery Nomenclature and Database Project
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Introduction
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Overview and Minimum Dataset
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Atrial Septal Defect
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Ventricular Septal Defect
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Atrioventricular Canal Defect
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Aortopulmonary Window
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Truncus Arteriosus
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Pulmonary Venous Anomalies
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Systemic Venous Anomalies
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Tetralogy of Fallot
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Right Ventricular Outflow Tract Obstruction–Intact Ventricular Septum
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Pulmonary Atresia–Ventricular Septal Defect
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Ebstein's Anomaly and Tricuspid Valve Disease
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Aortic Valve Disease
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Mitral Valve Disease
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Aortic Aneurysm, Sinus of Valsalva Aneurysm, and Aortic Dissection
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Aortico-Left Ventricular Tunnel
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Hypoplastic Left Heart Syndrome
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Pediatric Cardiomyopathies and End-Stage Congenital Heart Disease
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Diseases of the Pericardium
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Single Ventricle
Ann Thorac Surg
Congenital Heart Surgery Nomenclature and Database Project: Transposition of the Great Arteries
Ann Thorac Surg
Cited by (59)
Providing a framework for evaluation disease registry and health outcomes Software: Updating the CIPROS checklist
2024, Journal of Biomedical InformaticsData and databases for pediatric and adult congenital cardiac care
2023, Intelligence-Based Cardiology and Cardiac Surgery: Artificial Intelligence and Human Cognition in Cardiovascular MedicineSingle-Ventricle Palliation in Low- and Middle-Income Countries
2019, Journal of the American College of CardiologyCurrent situation of the organisation, resources and activity in paediatric cardiology in Spain
2019, Anales de PediatriaCritical care databases and quality collaboratives
2018, Critical Heart Disease in Infants and Children
Web page: http://www.heartsurgery-csa.com/
Web page: http://www.CHIF.us/