Congenital heart surgery databases around the world: do we need a global database?

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 review article will achieve the following objectives: (A) Consider the current state of analysis of outcomes of treatments for patients with congenitally malformed hearts. (B) Present some principles that might make it possible to achieve life-long longitudinal monitoring and follow-up. (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. To perform meaningful multi-institutional analyses, any database must incorporate the following six essential elements: (1) Use of a common language and nomenclature. (2) Use of a database with an established uniform core dataset for collection of information. (3) Incorporation of a mechanism to evaluate the complexity of cases. (4) Implementation of a mechanism to assure and verify the completeness and accuracy of the data collected. (5) Collaboration between medical and surgical subspecialties. (6) Standardization of protocols for life-long longitudinal follow-up. Analysis of outcomes must move beyond recording 30-day or hospital mortality, and encompass longer-term follow-up, including cardiac and non-cardiac morbidities, and importantly, those morbidities impacting health-related quality of life. Methodologies must be implemented in our databases to allow uniform, protocol-driven, and meaningful long-term follow-up. 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 and maintains the integrity of these extant databases. Description of outcomes requires true multi-disciplinary involvement, and should include surgeons, cardiologists, anesthesiologists, intensivists, perfusionists, neurologists, educators, primary care physicians, nurses, and physical therapists. Outcomes should determine primary therapy, and as such must be monitored life-long. The relatively small numbers of patients with congenitally malformed hearts requires multi-institutional cooperation to accomplish these goals. The creation of a Global 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.

[1]  W. Luo,et al.  Does cardioplegia leave room for postconditioning in paediatric cardiac surgery?* , 2008, Cardiology in the Young.

[2]  M. Jacobs,et al.  The importance of nomenclature for congenital cardiac disease: implications for research and evaluation , 2008, Cardiology in the Young.

[3]  F. Lacour-Gayet.  Congenital Heart Surgery Nomenclature and Database Project: right ventricular outflow tract obstruction-intact ventricular septum. , 2000, The Annals of thoracic surgery.

[4]  H. Jeffries,et al.  Congenital cardiac surgical complications of the integument, vascular system, vascular-line(s), and wounds: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease , 2008, Cardiology in the Young.

[5]  Rajesh Sharma,et al.  The improvement of care for paediatric and congenital cardiac disease across the World: a challenge for the World Society for Pediatric and Congenital Heart Surgery , 2008, Cardiology in the Young.

[6]  Eugene H Blackstone,et al.  Making sense of congenital cardiac disease with a research database: The Congenital Heart Surgeons’ Society Data Center* , 2008, Cardiology in the Young.

[7]  C. Mavroudis,et al.  Congenital Heart Surgery Nomenclature and Database Project: patent ductus arteriosus, coarctation of the aorta, interrupted aortic arch. , 2000, The Annals of thoracic surgery.

[8]  A. Cook,et al.  Extending the surgical boundaries in the management of the left ventricular outflow tract obstruction in discordant ventriculo-arterial connections – a surgical and morphological study , 2008, Cardiology in the Young.

[9]  J. Mayer,et al.  Congenital Heart Surgery Nomenclature and Database Project: single ventricle. , 2000, The Annals of thoracic surgery.

[10]  M. Elliott,et al.  Presentation of the International Nomenclature for Congenital Heart Surgery. The long way from nomenclature to collection of validated data at the EACTS. , 2000, European journal of cardio-thoracic surgery : official journal of the European Association for Cardio-thoracic Surgery.

[11]  Adrian F Hernandez,et al.  Linking inpatient clinical registry data to Medicare claims data using indirect identifiers. , 2009, American heart journal.

[12]  M. L. Jacobs,et al.  Congenital Heart Surgery Nomenclature and Database Project: tetralogy of Fallot. , 2000, The Annals of thoracic surgery.

[13]  J. Lamberti,et al.  Congenital Heart Surgery Nomenclature and Database Project: mitral valve disease. , 2000, The Annals of thoracic surgery.

[14]  C. Mavroudis,et al.  Congenital Heart Surgery Nomenclature and Database Project: arrhythmias. , 2000, The Annals of thoracic surgery.

[15]  M. Béland,et al.  Report from the Executive of The International Working Group for Mapping and Coding of Nomenclatures for Paediatric and Congenital Heart Disease , 2002, Cardiology in the Young.

[16]  Statistical issues in the analysis and interpretation of outcomes for congenital cardiac surgery , 2008, Cardiology in the Young.

[17]  Robert H. Anderson,et al.  Classification of the functionally univentricular heart: unity from mapped codes , 2006, Cardiology in the Young.

[18]  J. Dearani,et al.  Congenital Heart Surgery Nomenclature and Database Project: Ebstein's anomaly and tricuspid valve disease. , 2000, The Annals of thoracic surgery.

[19]  David Shahian,et al.  Regulatory and ethical considerations for linking clinical and administrative databases. , 2009, American heart journal.

[20]  J. Jacobs,et al.  Introduction – Databases and the assessment of complications associated with the treatment of patients with congenital cardiac disease , 2008, Cardiology in the Young.

[21]  M. Elliott,et al.  Analysis of outcomes for congenital cardiac disease: can we do better? , 2007, Cardiology in the Young.

[22]  Kimberlee Gauvreau,et al.  Consensus-based method for risk adjustment for surgery for congenital heart disease. , 2002, The Journal of thoracic and cardiovascular surgery.

[23]  K. Gauvreau,et al.  Center-specific differences in mortality: preliminary analyses using the Risk Adjustment in Congenital Heart Surgery (RACHS-1) method. , 2002, The Journal of thoracic and cardiovascular surgery.

[24]  Sean M. O'Brien,et al.  The complex relationship between pediatric cardiac surgical case volumes and mortality rates in a national clinical database. , 2009, The Journal of thoracic and cardiovascular surgery.

[25]  Sean M. O'Brien,et al.  An empirically based tool for analyzing mortality associated with congenital heart surgery. , 2009, The Journal of thoracic and cardiovascular surgery.

[26]  C. Mavroudis,et al.  Editorial (Mavroudis Supplement)Introduction , 2000 .

[27]  J. Rychik,et al.  Guidelines for the outpatient management of complex congenital heart disease. , 2006, Congenital heart disease.

[28]  M Pozzi,et al.  The Aristotle score: a complexity-adjusted method to evaluate surgical results. , 2004, European journal of cardio-thoracic surgery : official journal of the European Association for Cardio-thoracic Surgery.

[29]  STS/EACTS Short List mapping to European Paediatric Cardiac Code Short List with ICD-9 & ICD-10 crossmapping , 2002, Cardiology in the Young.

[30]  M. Béland,et al.  The current status and future directions of efforts to create a global database for the outcomes of therapy for congenital heart disease , 2005, Cardiology in the Young.

[31]  M. Béland,et al.  The nomenclature, definition and classification of hypoplastic left heart syndrome , 2006, Cardiology in the Young.

[32]  M. Béland,et al.  Bidirectional crossmap of the Short Lists of the European Paediatric Cardiac Code and the International Congenital Heart Surgery Nomenclature and Database Project , 2002, Cardiology in the Young.

[33]  Laura P Coombs,et al.  The Society of Thoracic Surgeons: 30-day operative mortality and morbidity risk models. , 2003, The Annals of thoracic surgery.

[34]  B. Markovitz,et al.  The effect of surgical case volume on outcome after the Norwood procedure. , 2005, The Journal of thoracic and cardiovascular surgery.

[35]  J. Jacobs.  Software development, nomenclature schemes, and mapping strategies for an international pediatric cardiac surgery database system. , 2002, Seminars in thoracic and cardiovascular surgery. Pediatric cardiac surgery annual.

[36]  Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – the perspective of critical care , 2008, Cardiology in the Young.

[37]  M. Jacobs,et al.  Initial application in the STS congenital database of complexity adjustment to evaluate surgical case mix and results. , 2005, The Annals of thoracic surgery.

[38]  J. Mayer,et al.  The rationale for incorporation of HIPAA compliant unique patient, surgeon, and hospital identifier fields in the STS database. , 2008, The Annals of thoracic surgery.

[39]  J. Gold,et al.  Virtues of a worldwide congenital heart surgery database. , 2002, Seminars in thoracic and cardiovascular surgery. Pediatric cardiac surgery annual.

[40]  M. Jacobs,et al.  Atrioventricular Septal Defects: Lessons Learned About Patterns of Practice and Outcomes From the Congenital Heart Surgery Database of the Society of Thoracic Surgeons , 2010, World journal for pediatric & congenital heart surgery.

[41]  P. Weinberg,et al.  Congenital Heart Surgery Nomenclature and Database Project: systemic venous anomalies. , 2000, The Annals of thoracic surgery.

[42]  Geoffrey L. Bird,et al.  Neurological complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease , 2008, Cardiology in the Young.

[43]  Sean M. O'Brien,et al.  Evaluation of the quality of care in congenital heart surgery: contribution of the Aristotle complexity score. , 2007, Advances in pediatrics.

[44]  C. Mavroudis,et al.  Congenital heart disease outcome analysis: methodology and rationale. , 2002, The Journal of thoracic and cardiovascular surgery.

[45]  Z. Tobota,et al.  The European Congenital Heart Defects Surgery Database experience: Pediatric European Cardiothoracic Surgical Registry of the European Association for Cardio-Thoracic Surgery. , 2002, Seminars in thoracic and cardiovascular surgery. Pediatric cardiac surgery annual.

[46]  M. Jacobs,et al.  Congenital Heart Surgery Nomenclature and Database Project: hypoplastic left heart syndrome. , 2000, The Annals of thoracic surgery.

[47]  J. Jacobs,et al.  Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – the perspective of anaesthesia , 2008, Cardiology in the Young.

[48]  Sean M. O'Brien,et al.  Accuracy of the aristotle basic complexity score for classifying the mortality and morbidity potential of congenital heart surgery operations. , 2007, The Annals of thoracic surgery.

[49]  J. Jacobs,et al.  Empowering a database with national long-term data about mortality: the use of national death registries , 2008, Cardiology in the Young.

[50]  J. Monro,et al.  Survival after surgery or therapeutic catheterisation for congenital heart disease in children in the United Kingdom: analysis of the central cardiac audit database for 2000-1 , 2004, BMJ : British Medical Journal.

[51]  M. Jacobs,et al.  Current status of the European Association for Cardio-Thoracic Surgery and the Society of Thoracic Surgeons Congenital Heart Surgery Database. , 2005, The Annals of thoracic surgery.

[52]  R. Franklin,et al.  Verification of data in congenital cardiac surgery , 2008, Cardiology in the Young.

[53]  K. Gauvreau,et al.  Stratification of complexity: The Risk Adjustment for Congenital Heart Surgery-1 Method and The Aristotle Complexity Score – past, present, and future , 2008, Cardiology in the Young.

[54]  W. S. Ring,et al.  Congenital Heart Surgery Nomenclature and Database Project: aortic aneurysm, sinus of Valsalva aneurysm, and aortic dissection. , 2000, The Annals of thoracic surgery.

[55]  R. Cerfolio,et al.  The ethics of transparency: publication of cardiothoracic surgical outcomes in the lay press. , 2009, The Annals of thoracic surgery.

[56]  Geoffrey L. Bird,et al.  Complications related to the transplantation of thoracic organs: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease , 2008, Cardiology in the Young.

[57]  A. Stubberöd,et al.  Patients not included in medical audit have a worse outcome than those included. , 1996, International journal for quality in health care : journal of the International Society for Quality in Health Care.

[58]  European Paediatric Cardiac Code Short List crossmapped to STS/EACTS Short List with ICD-9 & ICD-10 crossmapping , 2002, Cardiology in the Young.

[59]  M. Jacobs,et al.  The Aristotle score for congenital heart surgery. , 2004, Seminars in thoracic and cardiovascular surgery. Pediatric cardiac surgery annual.

[60]  J. Monro,et al.  An attempt at data verification in the EACTS Congenital Database. , 2005, European Journal of Cardio-Thoracic Surgery.

[61]  R. Franklin,et al.  Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – the perspective of cardiology , 2008, Cardiology in the Young.

[62]  A. Rocchini.  Congenital Heart Surgery Nomenclature and Database Project: therapeutic cardiac catheter interventions. , 2000, Annals of Thoracic Surgery.

[63]  E. Rosenkranz,et al.  Analysis of regional congenital cardiac surgical outcomes in Florida using The Society of Thoracic Surgeons Congenital Heart Surgery Database , 2009, Cardiology in the Young.

[64]  B. Diggs,et al.  Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – a comparison of administrative and clinical data , 2008, Cardiology in the Young.

[65]  K. Jenkins.  Risk adjustment for congenital heart surgery: the RACHS-1 method. , 2004, Seminars in thoracic and cardiovascular surgery. Pediatric cardiac surgery annual.

[66]  P. Barach,et al.  Anaesthetic complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease , 2008, Cardiology in the Young.

[67]  Sean M. O'Brien,et al.  Major infection after pediatric cardiac surgery: a risk estimation model. , 2010, The Annals of thoracic surgery.

[68]  S. Colan,et al.  Cardiac complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease , 2008, Cardiology in the Young.

[69]  K. Jenkins,et al.  The RACHS-1 risk categories reflect mortality and length of hospital stay in a large German pediatric cardiac surgery population. , 2004, European journal of cardio-thoracic surgery : official journal of the European Association for Cardio-thoracic Surgery.

[70]  Sean M. O'Brien,et al.  Center variation and outcomes associated with delayed sternal closure after stage 1 palliation for hypoplastic left heart syndrome. , 2010, The Journal of thoracic and cardiovascular surgery.

[71]  D. Nelson,et al.  Endocrinal complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease , 2008, Cardiology in the Young.

[72]  M. Jacobs,et al.  The assessment of complexity in congenital cardiac surgery based on objective data , 2008, Cardiology in the Young.

[73]  Frank E Harrell,et al.  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. , 2007, The Journal of thoracic and cardiovascular surgery.

[74]  F. Lacour-Gayet,et al.  Birth weight and complexity are significant factors for the management of hypoplastic left heart syndrome. , 2006, The Annals of thoracic surgery.

[75]  J. William Gaynor,et al.  Congenital heart surgery nomenclature and database project. Update and proposed data harvest. , 2002, The Japanese journal of thoracic and cardiovascular surgery : official publication of the Japanese Association for Thoracic Surgery = Nihon Kyobu Geka Gakkai zasshi.

[76]  C. Pizarro,et al.  Aristotle Score Predicts Outcome in Patients Requiring Extracorporeal Circulatory Support Following Repair of Congenital Heart Disease , 2007, ASAIO journal.

[77]  F. Lacour-Gayet,et al.  The Aristotle method: a new concept to evaluate quality of care based on complexity , 2005, Current opinion in pediatrics.

[78]  R. Delius.  Congenital Heart Surgery Nomenclature and Database Project: pediatric cardiomyopathies and end-stage congenital heart disease. , 2000, The Annals of thoracic surgery.

[79]  C. Mavroudis,et al.  Congenital Heart Surgery Nomenclature and Database Project: atrial septal defect. , 2000, The Annals of thoracic surgery.

[80]  C. Mavroudis,et al.  Congenital Heart Surgery Nomenclature and Database Project: aortopulmonary window. , 2000, The Annals of thoracic surgery.

[81]  M. Béland,et al.  Gastrointestinal complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease , 2008, Cardiology in the Young.

[82]  Sean M. O'Brien,et al.  Cardiac surgery in infants with low birth weight is associated with increased mortality: analysis of the Society of Thoracic Surgeons Congenital Heart Database. , 2008, The Journal of thoracic and cardiovascular surgery.

[83]  K. Nguyen.  Congenital Heart Surgery Database and Nomenclature Project: Aortic Valve Disease , 2000 .

[84]  C. Mavroudis,et al.  Congenital Heart Surgery Nomenclature and Database Project: anomalies of the coronary arteries. , 2000, The Annals of thoracic surgery.

[85]  C. Mavroudis,et al.  Congenital Heart Surgery Nomenclature and Database Project: vascular rings, tracheal stenosis, pectus excavatum. , 2000, The Annals of thoracic surgery.

[86]  Hiromi Kurosawa,et al.  Update from The International Working Group for Mapping and Coding of Nomenclatures for Paediatric and Congenital Heart Disease , 2004, Cardiology in the Young.

[87]  K. Gauvreau,et al.  Evidence-based referral results in significantly reduced mortality after congenital heart surgery. , 2003, Pediatrics.

[88]  R. Burke,et al.  Interinstitutional comparison of risk-adjusted mortality and length of stay in congenital heart surgery. , 2009, The Annals of thoracic surgery.

[89]  T. Miyamoto,et al.  Repair of truncus arteriosus and aortic arch interruption: outcome analysis. , 2005, The Annals of thoracic surgery.

[90]  M. Béland,et al.  Renal complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease , 2008, Cardiology in the Young.

[91]  M. Béland,et al.  The nomenclature, definition and classification of discordant atrioventricular connections , 2006, Cardiology in the Young.

[92]  F. Lacour-Gayet,et al.  Risk stratification theme for congenital heart surgery. , 2002, Seminars in thoracic and cardiovascular surgery. Pediatric cardiac surgery annual.

[93]  O. K. Hansen,et al.  The RACHS-1 risk categories reflect mortality and length of stay in a Danish population of children operated for congenital heart disease. , 2005, European journal of cardio-thoracic surgery : official journal of the European Association for Cardio-thoracic Surgery.

[94]  Paul Steinbok,et al.  Editorial Comment , 2000, Child's Nervous System.

[95]  R. Ohye,et al.  Haematological and infectious complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease , 2008, Cardiology in the Young.

[96]  P. Barach,et al.  Pulmonary complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease , 2008, Cardiology in the Young.

[97]  E. Bacha,et al.  Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – the perspective of cardiac surgery , 2008, Cardiology in the Young.

[98]  M. Jacobs,et al.  Congenital Heart Surgery Nomenclature and Database Project: double outlet right ventricle. , 2000, The Annals of thoracic surgery.

[99]  M. Jacobs,et al.  Report of the 2005 STS Congenital Heart Surgery Practice and Manpower Survey. , 2006, The Annals of thoracic surgery.

[100]  Robert H. Anderson,et al.  The nomenclature, definition and classification of cardiac structures in the setting of heterotaxy , 2007, Cardiology in the Young.

[101]  Robert H. Anderson,et al.  Performance of surgery for congenital heart disease: shall we wait a generation or look for different statistics? , 2005, The Journal of thoracic and cardiovascular surgery.

[102]  C. Mavroudis,et al.  Congenital Heart Surgery Nomenclature and Database Project: atrioventricular canal defect. , 2000, The Annals of thoracic surgery.

[103]  C. Mavroudis,et al.  Arrhythmic complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease , 2008, Cardiology in the Young.

[104]  T. Spray,et al.  Congenital Heart Surgery Nomenclature and Database Project: end-stage lung disease. , 2000, The Annals of thoracic surgery.

[105]  M. Jacobs,et al.  Congenital Heart Surgery Nomenclature and Database Project: truncus arteriosus. , 2000, Annals of Thoracic Surgery.

[106]  C. Tchervenkov,et al.  Congenital Heart Surgery Nomenclature and Database Project: pulmonary atresia--ventricular septal defect. , 2000, The Annals of thoracic surgery.

[107]  Martin Utley,et al.  Monitoring risk-adjusted outcomes in congenital heart surgery: does the appropriateness of a risk model change with time? , 2009, The Annals of thoracic surgery.

[108]  W. Williams,et al.  Practical experience with databases for congenital heart disease: a registry versus an academic database. , 2002, Seminars in thoracic and cardiovascular surgery. Pediatric cardiac surgery annual.

[109]  E. Bacha,et al.  Complications relating to perfusion and extracorporeal circulation associated with the treatment of patients with congenital cardiac disease: Consensus Definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease , 2008, Cardiology in the Young.

[110]  C. Mavroudis,et al.  Congenital Heart Surgery Nomenclature and Database Project: overview and minimum dataset. , 2000, The Annals of thoracic surgery.

[111]  W. S. Ring,et al.  The Society of Thoracic Surgeons National Congenital Heart Surgery Database Report: analysis of the first harvest (1994-1997). , 1999, The Annals of thoracic surgery.

[112]  K. Nguyen.  Congenital Heart Surgery Nomenclature and Database Project: aortic valve disease. , 2000, The Annals of thoracic surgery.

[113]  J. Jaggers,et al.  Congenital Heart Surgery Nomenclature and Database Project: transposition of the great arteries. , 2000, The Annals of thoracic surgery.

[114]  K. Jenkins,et al.  Evaluation of quality of care for congenital heart disease. , 2005, Seminars in thoracic and cardiovascular surgery. Pediatric cardiac surgery annual.

[115]  M. Jacobs,et al.  Congenital heart surgery nomenclature and database project. Update and proposed data harvest. , 2002, The Japanese journal of thoracic and cardiovascular surgery : official publication of the Japanese Association for Thoracic Surgery = Nihon Kyobu Geka Gakkai zasshi.

[116]  M. Jacobs,et al.  What is operative mortality? Defining death in a surgical registry database: a report of the STS Congenital Database Taskforce and the Joint EACTS-STS Congenital Database Committee. , 2006, The Annals of thoracic surgery.

[117]  J. Jacobs,et al.  Computerized outcomes analysis for congenital heart disease , 2005, Current opinion in pediatrics.

[118]  M. Béland,et al.  Nomenclature and databases for the surgical treatment of congenital cardiac disease – an updated primer and an analysis of opportunities for improvement , 2008, Cardiology in the Young.

[119]  H. B. Wood.  WHAT IS OPERATIVE MORTALITY , 1929 .

[120]  E. Bacha,et al.  The nomenclature of safety and quality of care for patients with congenital cardiac disease: a report of the Society of Thoracic Surgeons Congenital Database Taskforce Subcommittee on Patient Safety , 2008, Cardiology in the Young.

[121]  T. Karl,et al.  Congenital Heart Surgery Nomenclature and Database Project: corrected (discordant) transposition of the great arteries (and related malformations). , 2000, The Annals of thoracic surgery.

[122]  E. Bacha,et al.  Nomenclature and Databases — The Past, the Present, and the Future , 2007, Pediatric Cardiology.

[123]  Robert H. Anderson,et al.  Creating a database with cardioscopy and intra-operative imaging , 2005, Cardiology in the Young.

[124]  R. Sade,et al.  Congenital Heart Surgery Nomenclature and Database Project: palliation, correction, or repair? , 2000, The Annals of thoracic surgery.

[125]  J. Jaggers,et al.  Congenital Heart Surgery Nomenclature and Database Project: pulmonary venous anomalies. , 2000, The Annals of thoracic surgery.

[126]  E. Bacha,et al.  What is operative morbidity? Defining complications in a surgical registry database , 2007 .

[127]  M. Jacobs,et al.  Lessons learned from the data analysis of the second harvest (1998-2001) of the Society of Thoracic Surgeons (STS) Congenital Heart Surgery Database. , 2004, European journal of cardio-thoracic surgery : official journal of the European Association for Cardio-thoracic Surgery.

[128]  C. Mavroudis,et al.  Congenital Heart Surgery Nomenclature and Database Project: ventricular septal defect. , 2000, The Annals of thoracic surgery.

[129]  JenniferKulynych,et al.  The New HIPAA (Health Insurance Portability and Accountability Act of 1996) Medical Privacy Rule , 2003 .

[130]  Robert H. Anderson,et al.  Nomenclature for congenital and paediatric cardiac disease: Historical perspectives and The International Pediatric and Congenital Cardiac Code , 2008, Cardiology in the Young.

[131]  N. Sinzobahamvya,et al.  Comprehensive Aristotle score: implications for the Norwood procedure. , 2006, The Annals of thoracic surgery.