Databases and Registries Acronym Australia and New Zealand Fontan Registry Organization/Data Center Population Limitations Active (# of Programs) Australia and New Zealand Congenital Heart Research Centre All patients in Australia and New Zealand who have undergone a Fontan-type singleventricle repair All patients in Canada who have undergone surgical repair of tetralogy of Fallot, age >12 years Adult patients with congenital heart disease/defects Australia, New Zealand Yes Canada Yes (10 programs) United States, Canada Yes Unites States, Canada Yes (51 programs) United States Yes (20 sites) Worldwide Yes (215 members worldwide) United States, Canada Yes (68 programs) Worldwide Yes (189 programs in 50 countries) Canadian Outcomes Registry Late After Tetralogy of Fallot Repair CORRELATE Congenital Evaluation, Reporting, and Tracking Endeavour Congenital Cardiac Anesthesia Society Database CONGENERATE Adult Congenital Heart Association/McGill University, University of Sherbrooke, University of Montreal CCAS Congenital Cardiac Any procedures Anesthesia Society/Duke involving Clinical Research Institute congenital cardiac patients, limited to STS-CHSD participating sites C3PO Children's Hospital Boston Patients undergoing congenital cardiology interventional procedures CCISC Children's Hospital of Interventional Michigan Foundation cardiology procedures, tends to be very lesion specific CHSS Congenital Heart Specific congenital Surgeons Society (CHSS) heart lesions Data Center at The depending on study Hospital for Sick area (currently four Children, Toronto active studies) ECHSA European Congenital Patients undergoing Heart Surgeons any congenital heart Association surgical procedure Congenital Cardiac Catheterization Project on Outcomes Congenital Cardiovascular Interventional Study Consortium Congenital Heart Surgeons Society Database European Congenital Heart Surgeons Association Database European EURIPEDES Registry for ICD and CRT Devices in Pediatrics and Adults with Congenital Heart Disease European EUROMACS Canadian Institutes of Health Research/ The HUB-University of Toronto Association for European Paediatric and Congenital Cardiology/European Society of Cardiology/Competence Network Congenital Heart Defects Pediatric and congenital patients with ICD or CRT devices Europe + Russia Yes European Association of All-age patients Europe + Yes (47 Registry for Patients with Mechanical Circulatory Support Extracorporeal Life Support Organization Registry German Heart Institute Myocarditis Registry for Children Guangdong Registry of Congenital Heart Disease Improving Pediatric and Adult Congenital Treatments Interagency Registry for Mechanically Assisted Circulatory Support International Fetal Cardiac Intervention Registry International Pediatric Heart Failure Registry Cardio-Thoracic Surgery with durable and Russia temporary mechanical support devices programs) ELSO Extracorporeal Life Support Organization Patients undergoing Worldwide ECMO Yes (298 programs, 230 pediatric cardiac programs) MYKKE Association for European Pediatric Cardiology/Competence Network for Congenital Heart Defects Pediatric myocarditis Germany Yes All patients with diagnosed CHD Guangdong Province, China Yes (39 sites) IMPACT INTERMACS/ PediMACS IFCIR iPHFR International IQIC Quality Improvement Collaborative for Congenital Heart Surgery in Developing World Countries International ISHLT Society for Heart and Lung Transplantation Japan JCCVSD Congenital Cardiovascular National Cardiovascular Data Registry/American College of Cardiology/ Mid-America Heart Institute International Society for Heart and Lung Transplantation/University of Alabama Patients undergoing International Yes (99 sites: congenital 97 United cardiology States, 2 interventional International) procedures Patients with United Yes durable and States temporary mechanical support devices All patients Worldwide undergoing fetal cardiac interventions International Society for Congenital and Worldwide Heart and Lung acquired heart Transplantation/University failure in children of Alabama Global Forum in Low Worldwide Humanitarian Medicine resource/developing for Cardiology and countries Cardiac Surgery undergoing CHS Yes (18 programs) International Society for Heart and Lung Transplantation/University of Alabama Japanese Society for Cardiovascular Surgery Yes (6 participants, 10 pending) Yes (27 programs in 17 countries) Pediatric heart and lung transplants Worldwide Yes All patients in Japan undergoing congenital cardiac Japan Yes (119 programs in Japan) Cardiovascular congenital cardiac Surgical Database Japanese Registry for Patients with Mechanical Circulatory Support National Anesthesia Clinical Outcomes Registry National Congenital Heart Disease Audit surgery National Pediatric Cardiology Quality Improvement Collaborative National Register for Congenital Heart Defects Paediatric Intensive Care Audit Network J-MACS NACOR NPC-QIC Quebec Congenital Heart Database Research Registry of Pediatric Cardiac Surgery All-age patients Japan with durable and temporary mechanical support devices Yes Anesthesia Quality All patients Institute/American Society undergoing of Anesthesiologists anesthesia in participating hospitals National Institute for All patients in the Cardiovascular Outcomes United Kingdom Research (NICOR) undergoing congenital cardiac surgery Joint Council on Single-ventricle Congenital Heart patients Disease/Cincinnati Children's Hospital Medical Center United States Yes (283 programs)— very limited pediatric data United Kingdom United States Yes (34 programs including 14 specialty programs) Yes (58 programs) Competence Network for CHD Pediatric and congenital cardiac disease patients Germany Yes PICU admissions, including cardiac patients United Kingdom and Ireland Yes (34 programs and 7 specialty transport organizations) Yes (52 programs) PICANet Pediatric Heart PHTS Transplant Study Pediatric PC4 Cardiac Critical Care Consortium Pediatric PCMR Cardiomyopathy Registry Japan) Pediatric Heart Transplant Foundation/University of Alabama Pediatric Cardiac Critical Care Consortium/University of Michigan National Heart, Lung and Blood Institute (NHLBI)/Children's Cardiomyopathy Foundation Pediatric heart Worldwide transplant recipients Cardiac ICU patients United States, Canada Yes Patients with primary and idiopathic cardiomyopathy United States Yes (100 programs) Database derived Canada from administrative (Quebec) information on all patients in Quebec with a diagnosis of CHD All patients Finland undergoing cardiac surgery in Finland Yes Yes (5 programs) ... Worldwide ECMO Yes (298 programs, 230 pediatric cardiac programs) MYKKE Association for European Pediatric Cardiology/ Competence Network for Congenital Heart Defects Pediatric myocarditis Germany Yes... organizations) Yes (52 programs) PICANet Pediatric Heart PHTS Transplant Study Pediatric PC4 Cardiac Critical Care Consortium Pediatric PCMR Cardiomyopathy Registry Japan) Pediatric Heart Transplant Foundation/University of... College of Cardiology/ Mid-America Heart Institute International Society for Heart and Lung Transplantation/University of Alabama Patients undergoing International Yes (99 sites: congenital 97 United cardiology