Not Started Institutional Practice Details Print this Form

Date of Completion DD/MM/YYYY 1. Indicate the day, month, and year the form is being completed.

Previous year’s hospital case Less than or equal to 100 per year 2. volume of congenital cardiac 101-250 per year surgeries 251-500 per year Indicate the case volume of Tier 1 AND Tier 2 surgeries for the previous Greater than 500 per year calendar year. (This is the total number of surgeries, not the number of patients.)

Active congenital heart surgeons active congenital heart 3. Indicate the number of active congenital heart surgeons currently surgeons practicing at your hospital.

How is a congenital heart 3a surgeon certified in your country?

Cardioplegia Type Buckberg 4. Check all cardioplegia types that your hospital uses. If there are Custodiol/Bretschneider (HTK) multiple cardioplegia types that your hospital uses that are not Del Nido options in the list provided, enter all of them in the "other, specify" box Microplegia with Adenocaine seperating them by commas (,). 0 option(s) selected Microplegia with Potassium Plegisol/St. Thomas Roe's Solution University of Wisconsin Other, specify

Geographic Region Served Local: one city or metro area 5. Regional: geographically larger than a metro area National: one country International: multiple countries

Estimated Population Served Less than 10 million 6. Based on answer to the previous question. 10-30 million 31-50 million Greater than 51 million Unknown

Total number of institutions Missing Reason: 7. providing pediatric cardiac Clear Unknown services in the region. Based on answer to question 5. Specify the total number including your institution. If your institution is the only institution providing pediatric cardiac services in the region, specify one. Does your institution have an Yes 8. established pediatric cardiology No practice?

Number of pediatric cardiac 9. operating rooms at your institution

Does your institution have an Yes 10. exclusive pediatric cardiac No intensive care unit?

Does your institution have a Yes 11. pediatric cardiac intensivist? No

Does your institution have an Yes 12. ECMO program? No ECMO (Extracorporeal Membrane Oxygenation)

Does your hospital provide Yes 12a. extracorporeal No cardiopulmonary resuscitation (ECPR)? ECPR: ability to establish emergency ECMO within 30 minutes

Does your institution have a Yes 13. pediatric cardiac catheterization No laboratory?

Does your institution have an Yes 14. electrophysiology service? No

Does your hospital have an Yes 15. Electronic Medical Records No system (EMR)?

15a. Software Vendor

Does your hospital participate in Yes 16. a National Congenital Heart No Surgery Database?

16a. Enter Name of Database

Does your center have a routine Yes 17. preoperative planning No conference? Does your hospital have Yes 18. intraoperative Trans esophageal No ECHO?

Does your hospital have Yes 19. intraoperative Epicardial ECHO? No

Who performs the Pre-operative Cardiologist 20. Trans Thoracic ECHO? Cardiac Surgeon Trained ECHO Technologist

Usual Patient follow up post Cardiologist 21. discharge; Surgeon Referring Physician Other, Specify

© 2020 World Database for Pediatric and Congenital Heart Surgery Not Started Add Surgery Form Print this Form

First Three Letters of Patient Last 1. Name If this information cannot be provided, select a unique patient identifier.

Gender Female 2. Male Unknown

Date of Birth DD/MM/YYYY 3. Indicate patient's birthdate.

Local Hospital Patient ID

Date of Surgery DD/MM/YYYY 5. This is the date the patient enters the operating room. (Day/Month/Year)

Primary Cardiac Procedure 6.Select the patient's primary surgical procedure. If the patient has multiple operating room visits, these should be reported on additional "New Surgery Forms".

Anomalous systemic venous connection Mitral Valve (MV) Repair (Left Atrioventricular Valve) Anomalous systemic venous connection repair Mitral Valve Replacement (Left Atrioventricular Valve) Aortic Aneurysm Mitral Valve (MV) Replacement, Mechanical Mitral Valve (MV) Replacement, Bioprosthetic Aortic aneurysm repair Mitral Valve (MV) Replacement, Homograft Aortic Dissection Palliative Procedures Aortic Dissection repair Shunt, Ligation and Takedown Aortic Root Replacement Shunt, Systemic to pulmonary, Modified Blalock-Taussig Shunt (MBTS) Aortic Root Replacement, Bioprosthetic Shunt, Systemic to pulmonary, Central (shunt from aorta) Aortic Root Replacement, Mechanical Shunt, Systemic to pulmonary, Other Aortic Root Replacement, Homograft Pulmonary Artery banding (PAB) Aortic Root Replacement, Valve sparing Pulmonary Artery debanding Aortic Valve Disease Damus-Kaye-Stansel procedure (DKS) (creation of Aorto-pulmonary anastomosis without arch reconstruction) Ross procedure Bidirectional cavopulmonary anastomosis (BDCPA) (bidirectional Glenn) Konno procedure (with and without aortic valve replacement) Glenn (unidirectional cavopulmonary anastomosis) (unidirectional Glenn) Ross Konno Procedure Bilateral bidirectional cavopulmonary anastomosis (BBDCPA) (bilateral Repair of Supraaortic Stenosis bidirectional Glenn) Other aortic annular enlargement procedure Hemi-Fontan Aortic Valve Repair Hepatic vein to azygous vein connection, Direct or with Interposition Graft Aortic Valve Replacement Kawashima operation (superior cavopulmonary connection in setting of Aortic Valve Replacement (AVR), Mechanical interrupted IVC with azygous continuation) Aortic Valve Replacement (AVR), Bioprosthetic Bidirectional cavopulmonary anastomosis (BDCPA) (bidirectional Glenn) Re- repair (within 90 days) Aortic Valve Replacement (AVR), Homograft Partial Anomalous Pulmonary Venous Connection AP Window Partial Anomalous Pulmonary Venous Connection (PAPVC) repair Aorto-pulmonary (AP) window repair Partial Anomalous Pulmonary Venous Connection (PAPVC), Scimitar, Repair Pulmonary artery origin from ascending aorta (hemitruncus) repair PAPVC repair, Baffle redirection to left atrium with systemic vein translocation ASD (Warden) (SVC sewn to right atrial appendage) Patent Foramen Ovale (PFO), Primary closure Partial Anomalous Pulmonary Venous Connection (PAPVC) Re-repair (within 90 Atrial Septal Defect (ASD) repair, Primary closure days) Atrial Septal Defect (ASD) repair, Patch Patent Ductus Arteriosus Atrial Septal Defect (ASD) repair, Partial closure Patent Ductus Arteriosus (PDA) closure, Device Atrial Septal Defect (ASD) repair, Device Atrial Septal Defect (ASD) repair, Patch + Partial anomalous pulmonary venous Patent Ductus Arteriosus (PDA) closure, Surgical connection repair Pericardial Disease Atrial Septal Defect (ASD), Common atrium (single atrium), Septation Pericardial drainage procedure Atrial Septal Defect (ASD) creation/enlargement Pericardiectomy Atrial Septal Fenestration Pericardial procedure, Other Atrial fenestration closure Pulmonary Atresia/VSD AV Canal Pulmonary atresia - VSD (including TOF, PA) repair Atrioventricular (AV, AVSD) Septal Repair, Complete Pulmonary atresia - VSD – MAPCA repair, Complete single stage repair (1 stage Atrioventricular (AV, AVSD) Septal Repair , Intermediate (Transitional) that includes pulmonary unifocalization + VSD closure + RV to PA connection [with or Atrioventricular (AV, AVSD) Septal Repair , Partial (Incomplete) (PAVSD) without conduit]) Common atrioventricular (AV) valve Repair Pulmonary atresia - VSD – MAPCA repair, Status post prior complete Common atrioventricular (AV) valve Replacement unifocalization (includes VSD closure + RV to PA connection [with or without conduit]) Atrioventricular (AV, AVSD) Septal Defect Re-repair (within 90 days) Pulmonary atresia - VSD – MAPCA repair, Status post prior incomplete unifocalization (includes completion of pulmonary unifocalization + VSD closure + RV Cardiomyopathy to PA connection [with or without conduit]) Transplant, Heart Unifocalization MAPCA(s), Bilateral pulmonary unifocalization Transplant, Heart and lung Unifocalization MAPCA(s), Unilateral pulmonary unifocalization Coartaction of Aorta and Aortic arch hypoplasia Pulmonary Valve Disease Coarctation repair, End to end Pulmonary Valve (PV) Replacement, Mechanical Coarctation repair, End to end, Extended Pulmonary Valve (PV) Replacement, Bioprosthetic Coarctation repair, Subclavian flap Pulmonary Valve (PV) Replacement, Homograft Coarctation repair, Patch aortoplasty Pulmonary Valve (PV) Replacement, Other Coarctation repair, Interposition graft Pulmonary Valve (PV) Repair Coarctation repair, Other Pulmonary venous stenosis Coarctation repair + Ventricular Septal Defect repair Pulmonary venous stenosis repair Aortic arch repair Aortic arch repair + Ventricular Septal Defect repair Repair of Subaortic Stenosis Coarctation repair, Extra-anatomic Bypass Membrane Resection Coarctation Re-repair (within 90 days) Myomectomy Extended Myomectomy Conduit Operations Conduit placement, Right Ventricle (RV) to Pulmonary Artery (PA) (primary or RVOT Obstruction, IVS Pulmonary Stenosis reoperation) Right ventricular Outflow Tract (RVOT) procedure and/or Transannular patch Conduit placement, Left Ventricle (LV) to Pulmonary Artery (PA) 1 1/2 ventricular repair Conduit placement, Ventricle to aorta Pulmonary Artery (PA), reconstruction, Main Congenitally Corrected TGA Pulmonary Artery (PA), reconstruction, Central Pulmonary Artery (PA), reconstruction, Peripheral Congenitally corrected Transposition of the Great Arteries (TGA) repair, Atrial switch and ASO (double switch) Double Chamber Right Ventricle (DCRV) Congenitally corrected Transposition of the Great Arteries (TGA) repair, Atrial Single Ventricle switch and Rastelli Fontan Operation (Complete Cavo-pulmonary anastomosis), Extracardiac Type: Congenitally corrected Transposition of the Great Arteries (TGA) repair, VSD Fenestrated closure Fontan Operation (Complete Cavo-pulmonary anastomosis), Extracardiac Type: Congenitally corrected Transposition of the Great Arteries (TGA) repair, VSD Non-fenestrated closure and Left ventricular to Pulmonary Artery conduit Fontan Operation (Complete Cavo-pulmonary anastomosis), Lateral Tunnel Type Congenitally corrected Transposition of the Great Arteries (TGA) repair, Other Fontan Operation (Complete Cavo-pulmonary anastomosis), Extra/Intra Cardiac Cor triatriatum Type Cor triatriatum repair Fontan Operation (Complete Cavo-pulmonary anastomosis), Internal Conduit Type Coronary Artery Anomalies Fontan Operation (Complete Cavo-pulmonary anastomosis), Other Coronary artery fistula ligation Fontan revision or conversion (Re-do Fontan) Anomalous origin of coronary artery from pulmonary artery repair Fontan, Other Coronary artery bypass (CABG) Ventricular septation Anomalous aortic origin of coronary artery (AAOCA) repair Fontan Re-repair (within 90 days) Coronary artery procedure, Other Sinus of Valsalva Aneurysm DOLV Sinus of Valsalva, Aneurysm repair Double Outlet Left Ventricle repair (DOLV) Systemic venous obstruction DORV Systemic venous stenosis repair Double Outlet Right Ventricle (DORV), Intraventricular tunnel repair Tetralogy of Fallot Repair Electrophysiological Tetralogy of Fallot (TOF) repair Pacemaker implantation, Permanent Tetralogy of Fallot (TOF) repair, Ventriculotomy ICD (AICD) implantation Tetralogy of Fallot (TOF) repair, Transannular patch Arrhythmia surgery - atrial, Surgical Ablation Tetralogy of Fallot (TOF) repair, RV-PA conduit Arrhythmia surgery - ventricular, Surgical Ablation Tetralogy of Fallot (TOF) repair/Atrioventricular septal defect (AVSD) repair Hybrid Tetralogy of Fallot (TOF) - Absent pulmonary valve (PV) repair Hybrid Approach "Stage 1", Application of RPA & LPA bands Tetralogy of Fallot (TOF) repair, Pulmonary Artery (PA) Reconstruction Hybrid Approach "Stage 1", Stent placement in arterial duct (PDA) Tetralogy of Fallot (TOF) repair, Valvotomy Hybrid Approach "Stage 1", Stent placement in arterial duct (PDA) + application of Tetralogy of Fallot (TOF) Re-repair (within 90 days) RPA & LPA bands Total Anomalous Pulmonary Venous Connection Hybrid approach "Stage 2", Aortopulmonary amalgamation + Superior Cavopulmonary anastomosis(es) + PA Debanding + Aortic arch repair (Norwood Total Anomalous Pulmonary Venous Connection (TAPVC) repair [Stage 1] + Superior Cavopulmonary anastomosis(es) + PA Debanding) Total Anomalous Pulmonary Venous Connection (TAPVC) Re-repair (within 90 Hybrid approach "Stage 2", Aortopulmonary amalgamation + Superior days) Cavopulmonary anastomosis(es) + PA Debanding + Without aortic arch repair Hybrid Transposition of the Great Arteries Approach, Transcardiac balloon dilatation Arterial switch operation (ASO) Hybrid Approach, Transcardiac balloon dilatation Arterial switch operation (ASO) and VSD repair Hybrid Approach, Transcardiac transcatheter device placement Arterial switch procedure + Aortic arch repair Hypoplastic Left Heart and Related malformations Arterial switch procedure and VSD repair + Aortic arch repair Norwood procedure (w/mBT shunt) Arterial switch operation (ASO) Re-repair (within 90 days) Norwood procedure (RV-PA Conduit) Senning Conduit insertion right ventricle (RV) to pulmonary artery (PA) + Intraventricular Mustard tunnel left ventricle (LV) to neoaorta + arch reconstruction (Rastelli and Norwood type Atrial baffle procedure, Mustard or Senning revision arch reconstruction) (Yasui) Rastelli Norwood procedure Re-repair (within 90 days) Hypoplastic Left Heart Syndrome (HLHS) Biventricular Repair Reparation A L Etage Ventriculaire (REV) Aortic root translocation over left ventricle (Including Nikaidoh procedure) Interrupted Arch Transposition of the Great Arteries (TGA), Other procedures (Kawashima, Left Interrupted aortic arch repair Ventricular to Pulmonary Artery conduit, other) LV to Aorta Tunnel Tricuspid Valve Disease and Ebstein's Anomaly LV to aorta tunnel repair Ebstein's repair Mechanical Support Tricuspid Valve (TV) Replacement (Right Atrioventricular Valve) Extracorporeal membrane oxygenation (ECMO) Cannulation Tricuspid Valve (TV) Repair (Right Atrioventricular Valve) Extracorporeal membrane oxygenation (ECMO) Decannulation Ebstein's Re-repair (within 90 days) Right Heart Temporary Ventricular Assist Device (RVAD) Truncus Arteriosus Right Heart Long-Term Ventricular Assist Device (RVAD) Truncus arteriosus repair Left Heart Temporary Ventricular Assist Device (LVAD) Truncal Valve Repair Left Heart Long-Term Ventricular Assist Device (LVAD) Truncal Valve Replacement Total Artificial Heart (TAH) Truncus + Interrupted aortic arch repair (IAA) repair Miscellaneous Procedures Truncus arteriosus Re-repair (within 90 days) Aneurysm, Ventricular, Right, Repair Vascular Rings and Slings Aneurysm, Ventricular, Left, Repair Vascular ring repair Aneurysm, Pulmonary artery (PA), Repair Aortopexy Cardiac tumor resection Pulmonary artery (PA) sling repair Pulmonary AV fistula repair/occlusion VSD Ligation, Pulmonary artery (PA) Ventricular Septal Defect (VSD) repair, Primary closure Pulmonary embolectomy, Acute pulmonary embolus (PE) Ventricular Septal Defect (VSD) repair, Patch Pulmonary embolectomy, Chronic pulmonary embolus (PE) Ventricular Septal Defect (VSD) repair, Device Procedures for Chylothorax Ventricular Septal Defect (VSD), Multiple, Repair Other, specify Ventricular Septal Defect (VSD) creation/enlargement Mitral Valve Disease Ventricular septal patch fenestration Supravalvar mitral ring repair: resection Ventricular Septal Defect (VSD) Re-repair (within 90 days)

© 2020 World Database for Pediatric and Congenital Heart Surgery 3/10/2020 WDPCHS - Demographics Form

WORLD DATABASE FORFOR PEDIAPEDIATRIC AND CONGENITAL HEART SURGERY Global Admin taylor Change Password Logout

Harvest Add Surgery or Translate Blank Activity Patient ID Dashboard Reports Files Patient Forms Forms Report 

Not Started Demographics Form Current Language: English  Print this Form 1.Birth Country

AFG (Afghanistan) LTU (Lithuania) ALA (Åland Islands) LUX (Luxembourg) ALB (Albania) MAC (China, Macao Special Administrative Region) DZA (Algeria) MDG (Madagascar) ASM (American Samoa) MWI (Malawi) AND (Andorra) MYS (Malaysia) AGO (Angola) MDV (Maldives) AIA (Anguilla) MLI (Mali) ATG (Antigua and Barbuda) MLT (Malta) ARG (Argentina) MHL (Marshall Islands) ARM (Armenia) MTQ (Martinique) ABW (Aruba) MRT (Mauritania) AUS (Australia) MUS (Mauritius) AUT (Austria) MYT (Mayotte) AZE (Azerbaijan) MEX (Mexico) BHS (Bahamas) FSM (Micronesia, Federated States of) BHR (Bahrain) MCO (Monaco) BGD (Bangladesh) MNG (Mongolia) BRB (Barbados) MNE (Montenegro) BLR (Belarus) MSR (Montserrat) BEL (Belgium) MAR (Morocco) BLZ (Belize) MOZ (Mozambique) BEN (Benin) MMR (Myanmar) BMU (Bermuda) NAM (Namibia) BTN (Bhutan) NRU (Nauru) BOL (Bolivia, Plurinational State of) NPL (Nepal) BES (Bonaire, Saint Eustatius and Saba) NLD (Netherlands) BIH (Bosnia and Herzegovina) NCL (New Caledonia) BWA (Botswana) NZL (New Zealand) BRA (Brazil) NIC (Nicaragua) VGB (British Virgin Islands) NER (Niger) BRN (Brunei Darussalam) NGA (Nigeria) BGR (Bulgaria) NIU (Niue) BFA (Burkina Faso) NFK (Norfolk Island) BDI (Burundi) MNP (Northern Mariana Islands) KHM (Cambodia) NOR (Norway) CMR (Cameroon) PSE (Occupied Palestinian Territory) CAN (Canada) OMN (Oman) CPV (Cape Verde) PAK (Pakistan) CYM (Cayman Islands) PLW (Palau) CAF (Central African Republic) PAN (Panama) TCD (Chad) PNG (Papua New Guinea) CHL (Chile) PRY (Paraguay) CHN (China) PER (Peru) localhost:63481/Form/NewForm/-1?formTypeID=3&printForm=1 1/10 3/10/2020 WDPCHS - Demographics Form

COL (Colombia) PHL (Philippines) COM (Comoros) PCN (Pitcairn) COG (Congo) POL (Poland) COK (Cook Islands) PRT (Portugal) CRI (Costa Rica) PRI (Puerto Rico) CIV (Côted'ivoire) QAT (Qatar) HRV (Croatia) KOR (Republic of Korea) CUB (Cuba) MDA (Republic of Moldova) CUW (Curaçao) REU (Réunion) CYP (Cyprus) ROU (Romania) CZE (Czech Republic) RUS (Russian Federation) PRK (Democratic People's Republic of Korea) RWA (Rwanda) COD (Democratic Republic of the Congo) SHN (Saint Helena) DNK (Denmark) KNA (Saint Kitts and Nevis) DJI (Djibouti) LCA (Saint Lucia) DMA (Dominica) SPM (Saint Pierre and Miquelon) DOM (Dominican Republic) VCT (Saint Vincent and the Grenadines) ECU (Ecuador) BLM (Saint-Barthélemy) EGY (Egypt) MAF (Saint-Martin, French Part) SLV (El Salvador) WSM (Samoa) GNQ (Equatorial Guinea) SMR (San Marino) ERI (Eritrea) STP (Sao Tome and Principe) EST (Estonia) SAU (Saudi Arabia) ETH (Ethiopia) SEN (Senegal) FRO (Faeroe Islands) SRB (Serbia) FLK (Falkland Islands, Malvinas) SYC (Seychelles) FJI (Fiji) SLE (Sierra Leone) FIN (Finland) SGP (Singapore) FRA (France) SXM (Sint Maarten, Dutch Part) GUF (French Guiana) SVK (Slovakia) PYF (French Polynesia) SVN (Slovenia) GAB (Gabon) SLB (Solomon Islands) GMB (Gambia) SOM (Somalia) GEO (Georgia) ZAF (South Africa) DEU (Germany) SSD (South Sudan) GHA (Ghana) ESP (Spain) GIB (Gibraltar) LKA (Sri Lanka) GRC (Greece) SDN (Sudan) GRL (Greenland) SUR (Suriname) GRD (Grenada) SJM (Svalbard and Jan Mayen Islands) GLP (Guadeloupe) SWZ (Swaziland) GUM (Guam) SWE (Sweden) GTM (Guatemala) CHE (Switzerland) (GGY) Guernsey SYR (Syrian Arab Republic) GIN (Guinea) TJK (Tajikistan) GNB (Guinea-Bissau) THA (Thailand) GUY (Guyana) MKD (The Former Yugoslav Republic of Macedonia) HTI (Haiti) TLS (Timor-Leste) VAT (Holy See) TGO (Togo) HND (Honduras) TKL (Tokelau) HKG (China, Hong Kong Special) TON (Tonga) HUN (Hungary) TTO (Trinidad and Tobago) ISL (Iceland) TUN (Tunisia) IND (India) TUR (Turkey) IDN (Indonesia) TKM (Turkmenistan) IRN (Iran, Islamic Republic of) TCA (Turks and Caicos Islands) localhost:63481/Form/NewForm/-1?formTypeID=3&printForm=1 2/10 3/10/2020 WDPCHS - Demographics Form

IRQ (Iraq) TUV (Tuvalu) IRL (Ireland) UGA (Uganda) IMN (Isle of Man) UKR (Ukraine) ISR (Israel) ARE (United Arab Emirates) ITA (Italy) GBR (United Kingdom of) JAM (Jamaica) TZA (United Republic of Tanzania) JPN (Japan) USA (United States of America) JEY (Jersey) VIR (United States Virgin Islands) JOR (Jordan) URY (Uruguay) KAZ (Kazakhstan) UZB (Uzbekistan) KEN (Kenya) VUT (Vanuatu) KIR (Kiribati) VEN (Venezuela, Bolivarian Republic of) KWT (Kuwait) VNM (Vietnam) KGZ (Kyrgyzstan) WLF (Wallis and Futuna Islands) LAO (Lao, People's Democratic Republic) ESH (Western Sahara) LVA (Latvia) YEM (Yemen) LBN (Lebanon) ZMB (Zambia) LSO (Lesotho) ZWE (Zimbabwe) LBR (Liberia) OTH (Other, specify) LBY (Libya) Unknown LIE (Liechtenstein)

Premature Birth Yes 2.Indicate whether the patient was born prematurely as defined by No a gestational period of less than or equal to 37 weeks. Unknown

Race African-American (Black) 3. Alaska Indian American Indian Asian Caribbean Eskimo Hispanic/Latino Mixed race Pacific Islander White Other, specify

Unknown

Did patient have any non-cardiac Yes 4. congenital anatomic No abnormalities? Unknown

Non-cardiac congenital Major abnormality craniofacial 4a. anatomic abnormalities Major abnormality of brain Major abnormality of spine and spinal cord 0 option(s) selected Major abnormality of larynx - trachea - or bronchus Major abnormality of lung localhost:63481/Form/NewForm/-1?formTypeID=3&printForm=1 3/10 3/10/2020 WDPCHS - Demographics Form Major abnormality of abdominal wall Major abnormality of diaphragm Major abnormality of biliary system Major abnormality of gastrointestinal system Major abnormality of gastrointestinal system, Necrotizing enterocolitis Major abnormality of kidney - ureter - or bladder

Was patient diagnosed with a Yes 5. chromosomal abnormality? No Unknown

Chromosomal abnormality 5a.Check all that apply.

0 option(s) selected

Click each item below to deselect.

11p15.5 5p 11q 6p12 12p1.21 7q11 12p12.1 7q11.23 12q24 7q32 15q21.1 7q34 1q42.1 8q12 20p12 TGFBR1 or 2 22q11deletion Trisomy 08 2p21 Trisomy 09 3p22 Trisomy 13 45X0 Trisomy 18 47,XXY Trisomy 21 4p Other 4p16

Was the patient diagnosed with a Yes 6. syndrome? No Unknown

6a.Syndromes

0 option(s) selected

Click each item below to deselect.

Alagille syndrome (intrahepatic biliary duct agenesis) Kartagener syndrome (Siewert syndrome) (Primary ciliary Apert Syndrome dyskinesia) Brugada syndrome Klinefelter syndrome (XXY Syndrome) Cardiofaciocutaneous Syndrome LEOPARD syndrome Carpenter Syndrome Loeys-Dietz syndrome Cat-eye Syndrome Long QT syndrome CHARGE Association Marfan syndrome (15q21,1) Mucopolysaccharidosis localhost:63481/Form/NewForm/-1?formTypeID=3&printForm=1 4/10 3/10/2020 WDPCHS - Demographics Form Cornelia de Lange syndrome Noonan syndrome Cri-du-chat syndrome Patau syndrome (Trisomy 13) Deletion 10 p syndrome Pierre Robin syndrome Deletion 8 p syndrome Prune Belly Syndrome DiGeorge syndrome (velocardiofacial syndrome) (conotruncal Rethore Syndrome (Trisomy 9) anomaly face syndrome) (22q11 deletion) Fetal Rubella syndrome (Congenital rubella syndrome) Down syndrome (Trisomy 21) Rubinstein-Taybi Syndrome Edwards syndrome (Trisomy 18) Short QT Syndrome Ehlers- Danlos Syndrome Sickle cell disease Ellis-van Creveld syndrome Sickle cell trait Fetal alcohol syndrome (FAS) Smith-Lemli-Opitz syndrome Fetal drug exposure Turner syndrome (45XO) Goldenhar syndrome VACTERL syndrome (VACTER/VATER/VATERR syndrome) Heterotaxy syndrome Von Willebrand disease (vWD) Heterotaxy syndrome, Asplenia syndrome Williams syndrome (Williams-Beuren syndrome) (7q11/7q11.23) Heterotaxy syndrome, Polysplenia syndrome Wolff-Parkinson-White syndrome (WPW syndrome) Holt-Oram syndrome Wolf-Hirschhorn syndrome Jacobsen Syndrome Other Syndrome Kabuki syndrome

Is this the patient’s first congenital Yes 7 surgery? No Unknown

7aSpecify previous congenital cardiac operations

0 option(s) selected

Click each item below to deselect.

Anomalous systemic venous connection Ebstein's repair Tricuspid Valve (TV) Replacement (Right Atrioventricular Valve) Anomalous systemic venous connection repair PRIMPROC Tricuspid Valve (TV) Repair (Right Atrioventricular Valve) Aortic Aneurysm Ebstein's Re-repair (within 90 days) Aortic aneurysm repair Truncus Arteriosus Aortic Dissection Truncus arteriosus repair Aortic Dissection repair Truncal Valve Repair Aortic Root Replacement Truncal Valve Replacement Aortic Root Replacement, Bioprosthetic Truncus + Interrupted aortic arch repair (IAA) repair Aortic Root Replacement, Mechanical Truncus arteriosus Re-repair (within 90 days) Aortic Root Replacement, Homograft Vascular Rings and Slings Aortic Root Replacement, Valve sparing Vascular ring repair Aortic Valve Disease Aortopexy Ross procedure Pulmonary artery (PA) sling repair Konno procedure (with and without aortic valve replacement) VSD Ross Konno Procedure Ventricular Septal Defect (VSD) repair, Primary closure Repair of Supraaortic Stenosis Ventricular Septal Defect (VSD) repair, Patch Other aortic annular enlargement procedure Ventricular Septal Defect (VSD) repair, Device Aortic Valve Repair Ventricular Septal Defect (VSD), Multiple, Repair Aortic Valve Replacement Ventricular Septal Defect (VSD) creation/enlargement Aortic Valve Replacement (AVR), Mechanical Ventricular septal patch fenestration Aortic Valve Replacement (AVR), Bioprosthetic Ventricular Septal Defect (VSD) Re-repair (within 90 days) localhost:63481/Form/NewForm/-1?formTypeID=3&printForm=1 5/10 3/10/2020 WDPCHS - Demographics Form Aortic Valve Replacement (AVR), Homograft AP Window Aorto-pulmonary (AP) window repair Pulmonary artery origin from ascending aorta (hemitruncus) repair ASD Patent Foramen Ovale (PFO), Primary closure Atrial Septal Defect (ASD) repair, Primary closure Atrial Septal Defect (ASD) repair, Patch Atrial Septal Defect (ASD) repair, Device Atrial Septal Defect (ASD) repair, Patch + Partial anomalous pulmonary venous connection repair Atrial Septal Defect (ASD), Common atrium (single atrium), Septation Atrial Septal Defect (ASD) creation/enlargement Atrial Septal Fenestration Atrial fenestration closure AV Canal Atrioventricular (AV, AVSD) Septal Repair, Complete Atrioventricular (AV, AVSD) Septal Repair , Intermediate (Transitional) Atrioventricular (AV, AVSD) Septal Repair , Partial (Incomplete) (PAVSD) Common atrioventricular (AV) valve Repair Common atrioventricular (AV) valve Replacement Atrioventricular (AV, AVSD) Septal Defect Re-repair (within 90 days) Cardiomyopathy Transplant, Heart Transplant, Heart and lung Coartaction of Aorta and Aortic arch hypoplasia Coarctation repair, End to end Coarctation repair, End to end, Extended Coarctation repair, Subclavian flap Coarctation repair, Patch aortoplasty Coarctation repair, Interposition graft Coarctation repair, Other Coarctation repair + Ventricular Septal Defect repair Aortic arch repair Aortic arch repair + Ventricular Septal Defect repair Coarctation repair, Extra-anatomic Bypass Coarctation Re-repair (within 90 days) Conduit Operations Conduit placement, Right Ventricle (RV) to Pulmonary Artery (PA) (primary or reoperation) Conduit placement, Left Ventricle (LV) to Pulmonary Artery (PA) Conduit placement, Ventricle to aorta Congenitally Corrected TGA Congenitally corrected Transposition of the Great Arteries (TGA) repair, Atrial switch and ASO (double switch) Congenitally corrected Transposition of the Great Arteries (TGA) repair, Atrial switch and Rastelli Congenitally corrected Transposition of the Great Arteries (TGA) repair, VSD closure Congenitally corrected Transposition of the Great Arteries (TGA) repair, VSD closure and Left ventricular to Pulmonary Artery conduit localhost:63481/Form/NewForm/-1?formTypeID=3&printForm=1 6/10 3/10/2020 WDPCHS - Demographics Form Congenitally corrected Transposition of the Great Arteries (TGA) repair, Other Cor triatriatum Cor triatriatum repair Coronary Artery Anomalies Coronary artery fistula ligation Anomalous origin of coronary artery from pulmonary artery repair Coronary artery bypass (CABG) Anomalous aortic origin of coronary artery (AAOCA) repair Coronary artery procedure, Other DOLV Double Outlet Left Ventricle repair (DOLV) DORV Double Outlet Right Ventricle (DORV), Intraventricular tunnel repair Electrophysiological Pacemaker implantation, Permanent ICD (AICD) implantation Arrhythmia surgery - atrial, Surgical Ablation Arrhythmia surgery - ventricular, Surgical Ablation Hybrid Hybrid Approach "Stage 1", Application of RPA & LPA bands Hybrid Approach "Stage 1", Stent placement in arterial duct (PDA) Hybrid Approach "Stage 1", Stent placement in arterial duct (PDA) + application of RPA & LPA bands Hybrid approach "Stage 2", Aortopulmonary amalgamation + Superior Cavopulmonary anastomosis(es) + PA Debanding + Aortic arch repair (Norwood [Stage 1] + Superior Cavopulmonary anastomosis(es) + PA Debanding) Hybrid approach "Stage 2", Aortopulmonary amalgamation + Superior Cavopulmonary anastomosis(es) + PA Debanding + Without aortic arch repair Hybrid Approach, Transcardiac balloon dilatation Hybrid Approach, Transcardiac balloon dilatation Hybrid Approach, Transcardiac transcatheter device placement Hypoplastic Left Heart and Related malformations Norwood procedure (w/mBT shunt) Norwood procedure (RV-PA Conduit) Conduit insertion right ventricle (RV) to pulmonary artery (PA) + Intraventricular tunnel left ventricle (LV) to neoaorta + arch reconstruction (Rastelli and Norwood type arch reconstruction) (Yasui) Norwood procedure Re-repair (within 90 days) Interrupted Arch Interrupted aortic arch repair LV to Aorta Tunnel LV to aorta tunnel repair Mechanical Support Extracorporeal membrane oxygenation (ECMO) Cannulation Extracorporeal membrane oxygenation (ECMO) Decannulation Right Heart Temporary Ventricular Assist Device (RVAD) Right Heart Long-Term Ventricular Assist Device (RVAD) Left Heart Temporary Ventricular Assist Device (LVAD) Left Heart Long-Term Ventricular Assist Device (LVAD) Total Artificial Heart (TAH) localhost:63481/Form/NewForm/-1?formTypeID=3&printForm=1 7/10 3/10/2020 WDPCHS - Demographics Form Miscellaneous Procedures Aneurysm, Ventricular, Right, Repair Aneurysm, Ventricular, Left, Repair Aneurysm, Pulmonary artery (PA), Repair Cardiac tumor resection Pulmonary AV fistula repair/occlusion Ligation, Pulmonary artery (PA) Pulmonary embolectomy, Acute pulmonary embolus (PE) Pulmonary embolectomy, Chronic pulmonary embolus (PE) Procedures for Chylothorax Mitral Valve Disease Supravalvar mitral ring repair: resection Mitral Valve (MV) Repair (Left Atrioventricular Valve) Mitral Valve Replacement (Left Atrioventricular Valve) Mitral Valve (MV) Replacement, Mechanical Mitral Valve (MV) Replacement, Bioprosthetic Mitral Valve (MV) Replacement, Homograft Palliative Procedures Shunt, Systemic to pulmonary, Modified Blalock-Taussig Shunt (MBTS) Shunt, Systemic to pulmonary, Central (shunt from aorta) Shunt, Systemic to pulmonary, Other Pulmonary Artery banding (PAB) Pulmonary Artery debanding Damus-Kaye-Stansel procedure (DKS) (creation of Aorto- pulmonary anastomosis without arch reconstruction) Bidirectional cavopulmonary anastomosis (BDCPA) (bidirectional Glenn) Glenn (unidirectional cavopulmonary anastomosis) (unidirectional Glenn) Bilateral bidirectional cavopulmonary anastomosis (BBDCPA) (bilateral bidirectional Glenn) Hemi-Fontan Hepatic vein to azygous vein connection, Direct or with Interposition Graft Kawashima operation (superior cavopulmonary connection in setting of interrupted IVC with azygous continuation) Bidirectional cavopulmonary anastomosis (BDCPA) (bidirectional Glenn) Re-repair (within 90 days) Partial Anomalous Pulmonary Venous Connection Partial Anomalous Pulmonary Venous Connection (PAPVC) repair Partial Anomalous Pulmonary Venous Connection (PAPVC), Scimitar, Repair PAPVC repair, Baffle redirection to left atrium with systemic vein translocation (Warden) (SVC sewn to right atrial appendage) Partial Anomalous Pulmonary Venous Connection (PAPVC) Re- repair (within 90 days) Patent Ductus Arteriosus Patent Ductus Arteriosus (PDA) closure, Surgical Pericardial Disease Pericardial drainage procedure Pericardiectomy Pericardial procedure, Other Pulmonary Atresia/VSD Pulmonary atresia - VSD (including TOF, PA) repair Pulmonary atresia - VSD – MAPCA repair, Complete single stage localhost:63481/Form/NewForm/-1?formTypeID=3&printForm=1 8/10 3/10/2020 WDPCHS - Demographics Form repair (1 stage that includes pulmonary unifocalization + VSD closure + RV to PA connection [with or without conduit]) Pulmonary atresia - VSD – MAPCA repair, Status post prior complete unifocalization (includes VSD closure + RV to PA connection [with or without conduit]) Pulmonary atresia - VSD – MAPCA repair, Status post prior incomplete unifocalization (includes completion of pulmonary unifocalization + VSD closure + RV to PA connection [with or without conduit]) Unifocalization MAPCA(s), Bilateral pulmonary unifocalization Unifocalization MAPCA(s), Unilateral pulmonary unifocalization Pulmonary Valve Disease Pulmonary Valve (PV) Replacement, Mechanical Pulmonary Valve (PV) Replacement, Bioprosthetic Pulmonary Valve (PV) Replacement, Homograft Pulmonary Valve (PV) Repair Pulmonary venous stenosis Pulmonary venous stenosis repair Repair of Subaortic Stenosis Membrane Resection Myomectomy Extended Myomectomy RVOT Obstruction, IVS Pulmonary Stenosis Right ventricular Outflow Tract (RVOT) procedure and/or Transannular patch 1 1/2 ventricular repair Pulmonary Artery (PA), reconstruction, Main Pulmonary Artery (PA), reconstruction, Central Pulmonary Artery (PA), reconstruction, Peripheral Double Chamber Right Ventricle (DCRV) Single Ventricle Fontan Operation (Complete Cavo-pulmonary anastomosis), Extracardiac Type: Fenestrated Fontan Operation (Complete Cavo-pulmonary anastomosis), Extracardiac Type: Non-fenestrated Fontan Operation (Complete Cavo-pulmonary anastomosis), Lateral Tunnel Type Fontan Operation (Complete Cavo-pulmonary anastomosis), Extra/Intra Cardiac Type Fontan Operation (Complete Cavo-pulmonary anastomosis), Internal Conduit Type Fontan Operation (Complete Cavo-pulmonary anastomosis), Other Fontan revision or conversion (Re-do Fontan) Fontan, Other Ventricular septation Fontan Re-repair (within 90 days) Sinus of Valsalva Aneurysm Sinus of Valsalva, Aneurysm repair Systemic venous obstruction Systemic venous stenosis repair Tetralogy of Fallot Repair Tetralogy of Fallot (TOF) repair Tetralogy of Fallot (TOF) repair, Ventriculotomy Tetralogy of Fallot (TOF) repair, Transannular patch Tetralogy of Fallot (TOF) repair, RV-PA conduit Tetralogy of Fallot (TOF) repair/Atrioventricular septal defect localhost:63481/Form/NewForm/-1?formTypeID=3&printForm=1 9/10 3/10/2020 WDPCHS - Demographics Form (AVSD) repair Tetralogy of Fallot (TOF) - Absent pulmonary valve (PV) repair Tetralogy of Fallot (TOF) repair, Pulmonary Artery (PA) Reconstruction Tetralogy of Fallot (TOF) repair, Valvotomy Tetralogy of Fallot (TOF) Re-repair (within 90 days) Total Anomalous Pulmonary Venous Connection Total Anomalous Pulmonary Venous Connection (TAPVC) repair Total Anomalous Pulmonary Venous Connection (TAPVC) Re- repair (within 90 days) Transposition of the Great Arteries Arterial switch operation (ASO) Arterial switch operation (ASO) and VSD repair Arterial switch procedure + Aortic arch repair Arterial switch procedure and VSD repair + Aortic arch repair Arterial switch operation (ASO) Re-repair (within 90 days) Senning Mustard Atrial baffle procedure, Mustard or Senning revision Rastelli Reparation A L Etage Ventriculaire (REV) Aortic root translocation over left ventricle (Including Nikaidoh procedure) Transposition of the Great Arteries (TGA), Other procedures (Kawashima, Left Ventricular to Pulmonary Artery conduit, other) Tricuspid Valve Disease and Ebstein's Anomaly

© 2020 World Database for Pediatric and Congenital Heart Surgery

localhost:63481/Form/NewForm/-1?formTypeID=3&printForm=1 10/10

Not Started Tier 1 Surgery Form Print this Form

Date of Surgery DD/MM/YYYY

Primary Cardiac Procedure 1. Select the patient's primary surgical procedure. If the patient has multiple operating room visits, these should be reported on additional "New Surgery Forms".

AV Canal Fontan Operation (Complete Cavo-pulmonary anastomosis), Lateral Tunnel Type Atrioventricular (AV, AVSD) Septal Repair, Complete Fontan Operation (Complete Cavo-pulmonary anastomosis), Extra/Intra Atrioventricular (AV, AVSD) Septal Repair , Intermediate (Transitional) Cardiac Type Atrioventricular (AV, AVSD) Septal Repair , Partial (Incomplete) (PAVSD) Fontan Operation (Complete Cavo-pulmonary anastomosis), Internal Conduit Type Coartaction of Aorta and Aortic arch hypoplasia Fontan Operation (Complete Cavo-pulmonary anastomosis), Other Coarctation repair, End to end Fontan, Other Coarctation repair, End to end, Extended Coarctation repair, Subclavian flap Tetralogy of Fallot Repair Coarctation repair, Patch aortoplasty Tetralogy of Fallot (TOF) repair Coarctation repair, Interposition graft Tetralogy of Fallot (TOF) repair, Ventriculotomy Coarctation repair, Other Tetralogy of Fallot (TOF) repair, Transannular patch Coarctation repair, Extra-anatomic Bypass Tetralogy of Fallot (TOF) repair, RV-PA conduit Tetralogy of Fallot (TOF) repair, Pulmonary Artery (PA) Reconstruction Hypoplastic Left Heart and Related malformations Tetralogy of Fallot (TOF) repair, Valvotomy Norwood procedure (w/mBT shunt) Norwood procedure (RV-PA Conduit) Total Anomalous Pulmonary Venous Connection Hypoplastic Left Heart Syndrome (HLHS) Biventricular Repair Total Anomalous Pulmonary Venous Connection (TAPVC) repair Bidirectional cavopulmonary anastomosis (BDCPA) (bidirectional Glenn) Transposition of the Great Arteries Glenn (unidirectional cavopulmonary anastomosis) (unidirectional Glenn) Arterial switch operation (ASO) Bilateral bidirectional cavopulmonary anastomosis (BBDCPA) (bilateral bidirectional Glenn) Tricuspid Valve Disease and Ebstein's Anomaly Hemi-Fontan Ebstein's repair Partial Anomalous Pulmonary Venous Connection Truncus Arteriosus Partial Anomalous Pulmonary Venous Connection (PAPVC) repair Truncus arteriosus repair Partial Anomalous Pulmonary Venous Connection (PAPVC), Scimitar, VSD Repair Ventricular Septal Defect (VSD) repair, Primary closure PAPVC repair, Baffle redirection to left atrium with systemic vein translocation (Warden) (SVC sewn to right atrial appendage) Ventricular Septal Defect (VSD) repair, Patch Ventricular Septal Defect (VSD) repair, Device Single Ventricle Ventricular Septal Defect (VSD), Multiple, Repair Fontan Operation (Complete Cavo-pulmonary anastomosis), Extracardiac Ventricular Septal Defect (VSD) creation/enlargement Type: Fenestrated Fontan Operation (Complete Cavo-pulmonary anastomosis), Extracardiac Type: Non-fenestrated

Were there additional cardiac Yes 2. procedures done in the same OR No visit? Unknown 2a. Additional Cardiac Procedures

0 option(s) selected

Anomalous systemic venous connection Supravalvar mitral ring repair: resection Anomalous systemic venous connection repair Mitral Valve (MV) Repair (Left Atrioventricular Valve) Aortic Aneurysm Mitral Valve Replacement (Left Atrioventricular Valve) Aortic aneurysm repair Mitral Valve (MV) Replacement, Mechanical Mitral Valve (MV) Replacement, Bioprosthetic Aortic Dissection Mitral Valve (MV) Replacement, Homograft Aortic Dissection repair Palliative Procedures Aortic Root Replacement Shunt, Systemic to pulmonary, Modified Blalock-Taussig Shunt Aortic Root Replacement, Bioprosthetic (MBTS) Aortic Root Replacement, Mechanical Shunt, Systemic to pulmonary, Central (shunt from aorta) Aortic Root Replacement, Homograft Shunt, Systemic to pulmonary, Other Aortic Root Replacement, Valve sparing Pulmonary Artery banding (PAB) Aortic Valve Disease Pulmonary Artery debanding Ross procedure Damus-Kaye-Stansel procedure (DKS) (creation of Aorto- pulmonary anastomosis without arch reconstruction) Konno procedure (with and without aortic valve replacement) Bidirectional cavopulmonary anastomosis (BDCPA) (bidirectional Ross Konno Procedure Glenn) Repair of Supraaortic Stenosis Glenn (unidirectional cavopulmonary anastomosis) (unidirectional Other aortic annular enlargement procedure Glenn) Aortic Valve Repair Bilateral bidirectional cavopulmonary anastomosis (BBDCPA) (bilateral bidirectional Glenn) Aortic Valve Replacement Hemi-Fontan Aortic Valve Replacement (AVR), Mechanical Hepatic vein to azygous vein connection, Direct or with Aortic Valve Replacement (AVR), Bioprosthetic Interposition Graft Aortic Valve Replacement (AVR), Homograft Kawashima operation (superior cavopulmonary connection in AP Window setting of interrupted IVC with azygous continuation) Aorto-pulmonary (AP) window repair Bidirectional cavopulmonary anastomosis (BDCPA) (bidirectional Glenn) Re-repair (within 90 days) Pulmonary artery origin from ascending aorta (hemitruncus) repair Partial Anomalous Pulmonary Venous Connection ASD Partial Anomalous Pulmonary Venous Connection (PAPVC) repair Patent Foramen Ovale (PFO), Primary closure Partial Anomalous Pulmonary Venous Connection (PAPVC), Atrial Septal Defect (ASD) repair, Partial closure Scimitar, Repair Atrial Septal Defect (ASD) repair, Primary closure PAPVC repair, Baffle redirection to left atrium with systemic vein Atrial Septal Defect (ASD) repair, Patch translocation (Warden) (SVC sewn to right atrial appendage) Atrial Septal Defect (ASD) repair, Device Partial Anomalous Pulmonary Venous Connection (PAPVC) Re- Atrial Septal Defect (ASD) repair, Patch + Partial anomalous repair (within 90 days) pulmonary venous connection repair Patent Ductus Arteriosus Atrial Septal Defect (ASD), Common atrium (single atrium), Septation Patent Ductus Arteriosus (PDA) closure, device Atrial Septal Defect (ASD) creation/enlargement Patent Ductus Arteriosus (PDA) closure, Surgical Atrial Septal Fenestration Pericardial Disease Atrial fenestration closure Pericardial drainage procedure AV Canal Pericardiectomy Atrioventricular (AV, AVSD) Septal Repair, Complete Pericardial procedure, Other Atrioventricular (AV, AVSD) Septal Repair , Intermediate Pulmonary Atresia/VSD (Transitional) Pulmonary atresia - VSD (including TOF, PA) repair Atrioventricular (AV, AVSD) Septal Repair , Partial (Incomplete) Pulmonary atresia - VSD – MAPCA repair, Complete single stage (PAVSD) repair (1 stage that includes pulmonary unifocalization + VSD Common atrioventricular (AV) valve Repair closure + RV to PA connection [with or without conduit]) Common atrioventricular (AV) valve Replacement Pulmonary atresia - VSD – MAPCA repair, Status post prior Atrioventricular (AV, AVSD) Septal Defect Re-repair (within 90 complete unifocalization (includes VSD closure + RV to PA days) connection [with or without conduit]) Pulmonary atresia - VSD – MAPCA repair, Status post prior Cardiomyopathy incomplete unifocalization (includes completion of pulmonary Transplant, Heart unifocalization + VSD closure + RV to PA connection [with or without Transplant, Heart and lung conduit]) Unifocalization MAPCA(s), Bilateral pulmonary unifocalization Coartaction of Aorta and Aortic arch hypoplasia Unifocalization MAPCA(s), Unilateral pulmonary unifocalization Coarctation repair, End to end Coarctation repair, End to end, Extended Pulmonary Valve Disease Coarctation repair, Subclavian flap Pulmonary Valve (PV) Replacement, Mechanical Coarctation repair, Patch aortoplasty Pulmonary Valve (PV) Replacement, Bioprosthetic Coarctation repair, Interposition graft Pulmonary Valve (PV) Replacement, Homograft Coarctation repair, Other Pulmonary Valve (PV) Repair Coarctation repair + Ventricular Septal Defect repair Pulmonary venous stenosis Aortic arch repair Pulmonary venous stenosis repair Aortic arch repair + Ventricular Septal Defect repair Coarctation repair, Extra-anatomic Bypass Repair of Subaortic Stenosis Coarctation Re-repair (within 90 days) Membrane Resection Myomectomy Conduit Operations Extended Myomectomy Conduit placement, Right Ventricle (RV) to Pulmonary Artery (PA) (primary or reoperation) RVOT Obstruction, IVS Pulmonary Stenosis Conduit placement, Left Ventricle (LV) to Pulmonary Artery (PA) Right ventricular Outflow Tract (RVOT) procedure and/or Conduit placement, Ventricle to aorta Transannular patch 1 1/2 ventricular repair Congenitally Corrected TGA Pulmonary Artery (PA), reconstruction, Main Congenitally corrected Transposition of the Great Arteries (TGA) Pulmonary Artery (PA), reconstruction, Central repair, Atrial switch and ASO (double switch) Pulmonary Artery (PA), reconstruction, Peripheral Congenitally corrected Transposition of the Great Arteries (TGA) repair, Atrial switch and Rastelli Double Chamber Right Ventricle (DCRV) Congenitally corrected Transposition of the Great Arteries (TGA) Single Ventricle repair, VSD closure Fontan Operation (Complete Cavo-pulmonary anastomosis), Congenitally corrected Transposition of the Great Arteries (TGA) Extracardiac Type: Fenestrated repair, VSD closure and Left ventricular to Pulmonary Artery conduit Fontan Operation (Complete Cavo-pulmonary anastomosis), Congenitally corrected Transposition of the Great Arteries (TGA) Extracardiac Type: Non-fenestrated repair, Other Fontan Operation (Complete Cavo-pulmonary anastomosis), Cor triatriatum Lateral Tunnel Type Cor triatriatum repair Fontan Operation (Complete Cavo-pulmonary anastomosis), Extra/Intra Cardiac Type Coronary Artery Anomalies Fontan Operation (Complete Cavo-pulmonary anastomosis), Coronary artery fistula ligation Internal Conduit Type Anomalous origin of coronary artery from pulmonary artery repair Fontan Operation (Complete Cavo-pulmonary anastomosis), Coronary artery bypass (CABG) Other Anomalous aortic origin of coronary artery (AAOCA) repair Fontan revision or conversion (Re-do Fontan) Coronary artery procedure, Other Fontan, Other Ventricular septation DOLV Fontan Re-repair (within 90 days) Double Outlet Left Ventricle repair (DOLV) Sinus of Valsalva Aneurysm DORV Sinus of Valsalva, Aneurysm repair Double Outlet Right Ventricle (DORV), Intraventricular tunnel repair Systemic venous obstruction Electrophysiological Systemic venous stenosis repair Pacemaker implantation, Permanent Tetralogy of Fallot Repair ICD (AICD) implantation Tetralogy of Fallot (TOF) repair Arrhythmia surgery - atrial, Surgical Ablation Tetralogy of Fallot (TOF) repair, Ventriculotomy Arrhythmia surgery - ventricular, Surgical Ablation Tetralogy of Fallot (TOF) repair, Transannular patch Hybrid Tetralogy of Fallot (TOF) repair, RV-PA conduit Tetralogy of Fallot (TOF) repair/Atrioventricular septal defect Hybrid Approach "Stage 1", Application of RPA & LPA bands (AVSD) repair Hybrid Approach "Stage 1", Stent placement in arterial duct (PDA) Tetralogy of Fallot (TOF) - Absent pulmonary valve (PV) repair Hybrid Approach "Stage 1", Stent placement in arterial duct (PDA) Tetralogy of Fallot (TOF) repair, Pulmonary Artery (PA) + application of RPA & LPA bands Reconstruction Hybrid approach "Stage 2", Aortopulmonary amalgamation + Tetralogy of Fallot (TOF) repair, Valvotomy Superior Cavopulmonary anastomosis(es) + PA Debanding + Aortic arch repair (Norwood [Stage 1] + Superior Cavopulmonary Tetralogy of Fallot (TOF) Re-repair (within 90 days) anastomosis(es) + PA Debanding) Total Anomalous Pulmonary Venous Connection Hybrid approach "Stage 2", Aortopulmonary amalgamation + Superior Cavopulmonary anastomosis(es) + PA Debanding + Total Anomalous Pulmonary Venous Connection (TAPVC) repair Without aortic arch repair Hybrid Approach, Transcardiac balloon Total Anomalous Pulmonary Venous Connection (TAPVC) Re- dilatation repair (within 90 days) Hybrid Approach, Transcardiac balloon dilatation Transposition of the Great Arteries Hybrid Approach, Transcardiac transcatheter device placement Arterial switch operation (ASO) Hypoplastic Left Heart and Related malformations Arterial switch operation (ASO) and VSD repair Norwood procedure (w/mBT shunt) Arterial switch procedure + Aortic arch repair Norwood procedure (RV-PA Conduit) Arterial switch procedure and VSD repair + Aortic arch repair Arterial switch operation (ASO) Re-repair (within 90 days) Conduit insertion right ventricle (RV) to pulmonary artery (PA) + Senning Intraventricular tunnel left ventricle (LV) to neoaorta + arch Mustard reconstruction (Rastelli and Norwood type arch reconstruction) (Yasui) Atrial baffle procedure, Mustard or Senning revision Norwood procedure Re-repair (within 90 days) Rastelli Reparation A L Etage Ventriculaire (REV) Interrupted Arch Aortic root translocation over left ventricle (Including Nikaidoh Interrupted aortic arch repair procedure) LV to Aorta Tunnel Transposition of the Great Arteries (TGA), Other procedures (Kawashima, Left Ventricular to Pulmonary Artery conduit, other) LV to aorta tunnel repair Tricuspid Valve Disease and Ebstein's Anomaly Mechanical Support Ebstein's repair Extracorporeal membrane oxygenation (ECMO) Cannulation Tricuspid Valve (TV) Replacement (Right Atrioventricular Valve) Extracorporeal membrane oxygenation (ECMO) Decannulation Tricuspid Valve (TV) Repair (Right Atrioventricular Valve) Right Heart Temporary Ventricular Assist Device (RVAD) Ebstein's Re-repair (within 90 days) Right Heart Long-Term Ventricular Assist Device (RVAD) Left Heart Temporary Ventricular Assist Device (LVAD) Truncus Arteriosus Left Heart Long-Term Ventricular Assist Device (LVAD) Truncus arteriosus repair Total Artificial Heart (TAH) Truncal Valve Repair Truncal Valve Replacement Miscellaneous Procedures Truncus + Interrupted aortic arch repair (IAA) repair Aneurysm, Ventricular, Right, Repair Truncus arteriosus Re-repair (within 90 days) Aneurysm, Ventricular, Left, Repair Aneurysm, Pulmonary artery (PA), Repair Vascular Rings and Slings Cardiac tumor resection Vascular ring repair Pulmonary AV fistula repair/occlusion Aortopexy Ligation, Pulmonary artery (PA) Pulmonary artery (PA) sling repair Pulmonary embolectomy, Acute pulmonary embolus (PE) VSD Pulmonary embolectomy, Chronic pulmonary embolus (PE) Ventricular Septal Defect (VSD) repair, Primary closure Procedures for Chylothorax Ventricular Septal Defect (VSD) repair, Patch Other, specify Ventricular Septal Defect (VSD) repair, Device Mitral Valve Disease Ventricular Septal Defect (VSD), Multiple, Repair Ventricular Septal Defect (VSD) creation/enlargement Ventricular septal patch fenestration Ventricular Septal Defect (VSD) Re-repair (within 90 days)

Primary Cardiac Diagnosis 3. Related to this surgery (Check only one). Select the structural heart disease (such as aortic stenosis, valvar) as the primary diagnosis. Other diagnoses (such as rheumatic heart disease) will be listed as additional diagnoses.

Anomalous Systemic Venous Connection Mitral Valve Disease Systemic venous anomaly Mitral stenosis (Annular Hypoplasia) Aortic Aneurysm Mitral stenosis, Subvalvar Mitral stenosis, Subvalvar, Parachute Aortic aneurysm (including pseudoaneurysm) Mitral stenosis, Supravalvar mitral ring Aortic dissection Mitral stenosis, Valvar Aortic dissection Mitral regurgitation Aortic Valve Disease Mitral regurgitation and mitral stenosis Aortic stenosis, Subvalvar Mitral valve (MV), Other Aortic stenosis, Valvar Partial anomalous pulmonary venous connection Aortic stenosis, Supravalvar Partial anomalous pulmonary venous connection (PAPVC) Aortic valve atresia Partial anomalous pulmonary venous connection (PAPVC), scimitar Aortic insufficiency Patent ductus arteriosus Aortic insufficiency and aortic stenosis Patent ductus arteriosus (PDA) Aortic valve, Other Pericardial Disease AP Window Pericardial Disease (Non Specific) Aorto-pulmonary (AP) window (aortopulmonary window) Pulmonary artery origin from ascending aorta (hemitruncus) Pulmonary atresia ASD Pulmonary atresia Pulmonary atresia, Intact Ventricular Septum Patent oval foramen (patent foramen ovale) (PFO) Pulmonary atresia, VSD (Including TOF, PA) Atrial Septal Defect (ASD), Secundum Pulmonary atresia, Ventriuclar Septal Defect (VSD) - Multiple aorto- Atrial Septal Defect (ASD), Venosus pulmonary collateral artery Atrial Septal Defect (ASD), Coronary Sinus Pulmonary atresia MAPCA(s) (major aortopulmonary collateral[s]) (without Atrial Septal Defect (ASD), Common Atrium (single Atrium) PA-VSD) AV Canal Pulmonary Valve Disease Atrioventricular (AV) Canal Defect, Intermediate (transitional) Pulmonary insufficiency Atrioventricular (AV) Canal Defect, Partial (incomplete) (PAVSD) (ASD, Pulmonary valve, Other primum) Pulmonary insufficiency and pulmonary stenosis Complete Atrioventricular (AV) Canal Defect Pulmonary venous stenosis Cardiomyopathy Pulmonary venous stenosis Cardiomyopathy (including dilated, restrictive, and hypertrophic) Cardiomyopathy, End-stage congenital heart disease RVOT Obstruction and/or Pulmonary Stenosis Pulmonary stenosis, Valvar Coarctation of Aorta and Aortic arch hypoplasia Pulmonary stenosis, Subvalvar Coarctation of aorta Pulmonary artery stenosis (hypoplasia), Main (trunk) (Supravalvalar Aortic arch hypoplasia Stenosis) Ventricular Septal Defect (VSD) + Aortic arch hypoplasia Pulmonary artery stenosis, Branch, Central (within the hilar bifurcation) Ventricular Septal Defect (VSD) + Coarctation of aorta Pulmonary artery stenosis, Branch, Peripheral (at or beyond the hilar bifurcation) Conduit Failure Pulmonary artery, Discontinuous Conduit Failure Double Chamber Right Ventricle (DCRV) Congenitally Corrected TGA Shone’s syndrome Congenitally corrected Transposition of the Great Arteries (TGA), Intact Ventricular Septum (IVS) Shone’s syndrome Congenitally corrected Transposition of the Great Arteries (TGA) Shunt Failure Congenitally Corrected TGA Congenitally corrected Transposition of the Shunt Failure Great Arteries (TGA), Intact Ventricular Septum (IVS)-Left Ventricular Outflow Tract (LVOT) Obstruction Single Ventricle Congenitally Corrected TGA Congenitally corrected Transposition of the Single ventricle, Double Inlet left ventricle (DILV) Great Arteries (TGA), Ventricular Septal Defect (VSD) Single ventricle, Double Inlet Right Ventricle (DIRV) Congenitally Corrected TGA Congenitally corrected Transposition of the Single ventricle, Mitral atresia Great Arteries (TGA), Ventricular Septal Defect (VSD)-Left Ventricular Outflow Single ventricle, Unbalanced Atrio-ventricular canal (AV Canal) Defect Tract (LVOT) Obstruction Single ventricle, Heterotaxia syndrome Cor triatriatum Single ventricle, Other Cor triatriatum Single ventricle + Total anomalous pulmonary venous connection (TAPVC) Coronary Artery Anomalies Single ventricle, Tricuspid atresia Coronary artery anomaly, Aneurysm Sinus of Valsalva Fistula/Aneurysm Coronary artery anomaly, Anomalous aortic origin of coronary artery Sinus of Valsalva aneurysm (AAOCA) (AAOCA) Coronary artery anomaly, Anomalous pulmonary origin (includes ALCAPA) Systemic venous obstruction Coronary artery anomaly, Fistula Systemic venous obstruction Coronary artery anomaly, Other Tetralogy of Fallot DOLV Tetralogy of Fallot (TOF) Double Outlet Left Ventricle (DOLV) Tetralogy of Fallot (TOF), Pulmonary stenosis Tetralogy of Fallot (TOF), complete Atrio-ventricular (AV) septal Defect DORV Tetralogy of Fallot (TOF), Absent pulmonary valve Double Outlet Right Ventricle (DORV) Double Outlet Right Ventricle (DORV), Atrioventricular (AV) Septal Defect Total anomalous pulmonary venous connection Double Outlet Right Ventricle (DORV), Intact Ventricular Septum (IVS) Total anomalous pulmonary venous connection (TAPVC), Type 1 (supracardiac) Double Outlet Right Ventricle (DORV), Remote VSD (Uncommitted) Total anomalous pulmonary venous connection (TAPVC), Type 2 (cardiac) Double Outlet Right Ventricle (DORV), Tetralogy of Fallot (TOF) type Total anomalous pulmonary venous connection (TAPVC), Type 3 Double Outlet Right Ventricle (DORV), Transposition of Great Arteries (infracardiac) (TGA) Type Total anomalous pulmonary venous connection (TAPVC), Type 4 (mixed) Electrophysiological Transposition of the Great Arteries Arrhythmia Transposition of the Great Arteries (TGA), Intact Ventricular Septum (IVS)- Arrhythmia, atrial Left Ventricular Outflow Tract (LVOT) Obstruction Arrhythmia, heart block Arrhythmia, ventricular Transposition of the Great Arteries (TGA), Ventricular Septal Defect (VSD) Hypoplastic left heart syndrome Transposition of the Great Arteries (TGA), Intact Ventricular Septum (IVS) Transposition of the Great Arteries (TGA), Ventricular Septal Defect (VSD)- Hypoplastic left heart syndrome (HLHS) Left Ventricular Outflow Tract (LVOT) Obstruction Interrupted Arch Tricuspid Valve Disease and Ebstein's Anomaly Interrupted aortic arch (IAA) Ebstein's anomaly Interrupted aortic arch (IAA) + Aorto-Pulmonary window Tricuspid regurgitation, non-Ebstein's related Interrupted aortic arch (IAA) + Ventricular Septal Defect (VSD) Tricuspid regurgitation and tricuspid stenosis LV to Aorta Tunnel Tricuspid stenosis Left Ventricular to aorta tunnel Tricuspid valve (TV), Other Miscellaneous, Other Truncus arteriosus Atrial Isomerism, Left Truncus arteriosus Atrial Isomerism, Right Truncus arteriosus + Interrupted aortic arch (IAA) Dextrocardia Truncal valve insufficiency Levocardia Vascular rings and Slings Mesocardia Vascular Ring Aneurysm, Pulmonary artery Pulmonary Artery (PA) Sling Prosthetic valve failure Cardiac trauma VSD Cardiac tumor VSD Ventricular Septal Defect (VSD), Type 1 (Subarterial) (Supracristal) (Conal septal defect) (Infundibular) Pulmonary vascular obstructive disease (Eisenmenger’s) VSD Ventricular Septal Defect (VSD), Type 2 (Perimembranous) Prosthetic valve Endocarditis (Paramembranous) (Conoventricular) Situs inversus VSD Ventricular Septal Defect (VSD), Type 3 (Inlet) (AV canal type) Aneurysm, Other VSD Ventricular Septal Defect (VSD), Type 4 (Muscular) Aneurysm, Ventricular, Left (including pseudoaneurysm) VSD Ventricular Septal Defect (VSD), Type: Gerbode type (LV-RA Aneurysm, Ventricular, Right (including pseudoaneurysm) communication) VSD Ventricular Septal Defect (VSD), Multiple

Aortic Arch Coarctation? Yes 3a. No Unknown

Aortic Arch Hypoplasia? Yes 3b. No Unknown

Aortic Valve Atresia? Yes 3c. No Unknown

Aortic Valve Stenosis? Yes 3d. No Unknown

Aortic Valve Hypoplasia? Yes 3e. No Unknown

Mitral Valve Atresia? Yes 3f. No Unknown Mitral Valve Stenosis? Yes 3g. No Unknown

Mitral Valve Hypoplasia? Yes 3h. No Unknown

Ventricular Septal Defect? Yes 3i. No Unknown

Left Ventricle Size? Normal 3j. Small Unknown

Are there any additional Cardiac Yes 4. Diagnoses? No Unknown

Additional Cardiac Diagnoses 4a. Check all that apply. List the structural heart disease (such as aortic stenosis, valvar) as the primary diagnosis and other diagnoses (such as rheumatic heart disease) here.

0 option(s) selected

Anomalous Systemic Venous Connection Aneurysm, Ventricular, Right (including pseudoaneurysm) Systemic venous anomaly Mitral Valve Disease Aortic Aneurysm Mitral stenosis (Annular Hypoplasia) Mitral stenosis, Subvalvar Aortic aneurysm (including pseudoaneurysm) Mitral stenosis, Subvalvar, Parachute Aortic dissection Mitral stenosis, Supravalvar mitral ring Aortic dissection Mitral stenosis, Valvar Aortic Valve Disease Mitral regurgitation Aortic stenosis, Subvalvar Mitral regurgitation and mitral stenosis Aortic stenosis, Valvar Mitral valve (MV), Other Aortic stenosis, Supravalvar Partial anomalous pulmonary venous connection Aortic valve atresia Partial anomalous pulmonary venous connection (PAPVC) Aortic insufficiency Partial anomalous pulmonary venous connection (PAPVC), Aortic insufficiency and aortic stenosis scimitar Aortic valve, Other Patent ductus arteriosus AP Window Patent ductus arteriosus (PDA) Aorto-pulmonary (AP) window (aortopulmonary window) Pericardial Disease Pulmonary artery origin from ascending aorta (hemitruncus) Pericardial Disease (Non Specific) ASD Pulmonary atresia Patent oval foramen (patent foramen ovale) (PFO) Pulmonary atresia Atrial Septal Defect (ASD), Secundum Pulmonary atresia, Intact Ventricular Septum Atrial Septal Defect (ASD), Venosus Pulmonary atresia, VSD (Including TOF, PA) Atrial Septal Defect (ASD), Coronary Sinus Pulmonary atresia, Ventriuclar Septal Defect (VSD) - Multiple Atrial Septal Defect (ASD), Common Atrium (single Atrium) aorto-pulmonary collateral artery AV Canal Pulmonary atresia MAPCA(s) (major aortopulmonary collateral[s]) (without PA-VSD) Atrioventricular (AV) Canal Defect, Intermediate (transitional) Pulmonary Valve Disease Atrioventricular (AV) Canal Defect, Partial (incomplete) (PAVSD) Pulmonary insufficiency (ASD, primum) Pulmonary valve, Other Complete Atrioventricular (AV) Canal Defect Pulmonary insufficiency and pulmonary stenosis Cardiomyopathy Pulmonary venous stenosis Cardiomyopathy (including dilated, restrictive, and hypertrophic) Pulmonary venous stenosis Cardiomyopathy, End-stage congenital heart disease RVOT Obstruction and/or Pulmonary Stenosis Coarctation of Aorta and Aortic arch hypoplasia Pulmonary stenosis, Valvar Coarctation of aorta Pulmonary stenosis, Subvalvar Aortic arch hypoplasia Pulmonary artery stenosis (hypoplasia), Main (trunk) Ventricular Septal Defect (VSD) + Aortic arch hypoplasia (Supravalvalar Stenosis) Ventricular Septal Defect (VSD) + Coarctation of aorta Pulmonary artery stenosis, Branch, Central (within the hilar bifurcation) Conduit Failure Pulmonary artery stenosis, Branch, Peripheral (at or beyond the Conduit Failure hilar bifurcation) Congenitally Corrected TGA Pulmonary artery, Discontinuous Congenitally corrected Transposition of the Great Arteries (TGA), Double Chamber Right Ventricle (DCRV) Intact Ventricular Septum (IVS) Shone’s syndrome Congenitally corrected Transposition of the Great Arteries (TGA) Shone’s syndrome Congenitally Corrected TGA Congenitally corrected Transposition of the Great Arteries (TGA), Intact Ventricular Septum (IVS)-Left Shunt Failure Ventricular Outflow Tract (LVOT) Obstruction Shunt Failure Congenitally Corrected TGA Congenitally corrected Transposition of the Great Arteries (TGA), Ventricular Septal Defect (VSD) Single Ventricle Congenitally Corrected TGA Congenitally corrected Transposition Single ventricle, Double Inlet left ventricle (DILV) of the Great Arteries (TGA), Ventricular Septal Defect (VSD)-Left Single ventricle, Double Inlet Right Ventricle (DIRV) Ventricular Outflow Tract (LVOT) Obstruction Single ventricle, Mitral atresia Cor triatriatum Single ventricle, Unbalanced Atrio-ventricular canal (AV Canal) Cor triatriatum Defect Single ventricle, Heterotaxia syndrome Coronary Artery Anomalies Single ventricle, Other Coronary artery anomaly, Aneurysm Single ventricle + Total anomalous pulmonary venous connection Coronary artery anomaly, Anomalous aortic origin of coronary (TAPVC) artery (AAOCA) (AAOCA) Single ventricle, Tricuspid atresia Coronary artery anomaly, Anomalous pulmonary origin (includes ALCAPA) Sinus of Valsalva Fistula/Aneurysm Coronary artery anomaly, Fistula Sinus of Valsalva aneurysm Coronary artery anomaly, Other Systemic venous obstruction DOLV Systemic venous obstruction Double Outlet Left Ventricle (DOLV) Tetralogy of Fallot DORV Tetralogy of Fallot (TOF) Double Outlet Right Ventricle (DORV) Tetralogy of Fallot (TOF), Pulmonary stenosis Double Outlet Right Ventricle (DORV), Atrioventricular (AV) Septal Tetralogy of Fallot (TOF), complete Atrio-ventricular (AV) septal Defect Defect Double Outlet Right Ventricle (DORV), Intact Ventricular Septum Tetralogy of Fallot (TOF), Absent pulmonary valve (IVS) Total anomalous pulmonary venous connection Double Outlet Right Ventricle (DORV), Remote VSD (Uncommitted) Total anomalous pulmonary venous connection (TAPVC), Type 1 (supracardiac) Double Outlet Right Ventricle (DORV), Tetralogy of Fallot (TOF) type Total anomalous pulmonary venous connection (TAPVC), Type 2 (cardiac) Double Outlet Right Ventricle (DORV), Transposition of Great Arteries (TGA) Type Total anomalous pulmonary venous connection (TAPVC), Type 3 (infracardiac) Electrophysiological Total anomalous pulmonary venous connection (TAPVC), Type 4 Arrhythmia (mixed) Arrhythmia, atrial Transposition of the Great Arteries Arrhythmia, heart block Transposition of the Great Arteries (TGA), Intact Ventricular Arrhythmia, ventricular Septum (IVS)-Left Ventricular Outflow Tract (LVOT) Obstruction Hypoplastic left heart syndrome Transposition of the Great Arteries (TGA), Ventricular Septal Defect (VSD) Hypoplastic left heart syndrome (HLHS) Transposition of the Great Arteries (TGA), Intact Ventricular Interrupted Arch Septum (IVS) Interrupted aortic arch (IAA) Interrupted aortic arch (IAA) + Aorto-Pulmonary window Transposition of the Great Arteries (TGA), Ventricular Septal Interrupted aortic arch (IAA) + Ventricular Septal Defect (VSD) Defect (VSD)-Left Ventricular Outflow Tract (LVOT) Obstruction LV to Aorta Tunnel Tricuspid Valve Disease and Ebstein's Anomaly Left Ventricular to aorta tunnel Ebstein's anomaly Tricuspid regurgitation, non-Ebstein's related Miscellaneous, Other Tricuspid regurgitation and tricuspid stenosis Atrial Isomerism, Left Tricuspid stenosis Atrial Isomerism, Right Tricuspid valve (TV), Other Dextrocardia Levocardia Truncus arteriosus Mesocardia Truncus arteriosus Aneurysm, Pulmonary artery Truncus arteriosus + Interrupted aortic arch (IAA) Prosthetic valve failure Truncal valve insufficiency Cardiac tumor Vascular rings and Slings Pulmonary vascular obstructive disease (Eisenmenger’s) Vascular Ring Prosthetic valve Endocarditis Pulmonary Artery (PA) Sling Active Endocarditis VSD Rheumatic Heart Disease VSD Ventricular Septal Defect (VSD), Type 1 (Subarterial) Situs inversus (Supracristal) (Conal septal defect) (Infundibular) Aneurysm, Other VSD Ventricular Septal Defect (VSD), Type 2 (Perimembranous) Aneurysm, Ventricular, Left (including pseudoaneurysm) (Paramembranous) (Conoventricular) VSD Ventricular Septal Defect (VSD), Type 3 (Inlet) (AV canal type) VSD Ventricular Septal Defect (VSD), Type 4 (Muscular) VSD Ventricular Septal Defect (VSD), Type: Gerbode type (LV-RA communication) VSD Ventricular Septal Defect (VSD), Multiple

Aortic Arch Coarctation? Yes 4a.i No Unknown

Aortic Arch Hypoplasia? Yes 4a.ii No Unknown

Aortic Valve Atresia? Yes 4a.iii No Unknown

Aortic Valve Stenosis? Yes 4a.iv No Unknown

Aortic Valve Hypoplasia? Yes 4a.v No Unknown

Mitral Valve Atresia? Yes 4a.vi No Unknown Mitral Valve Stenosis? Yes 4a.vii No Unknown

Mitral Valve Hypoplasia? Yes 4a.viii No Unknown

Ventricular Septal Defect? Yes 4a.ix No Unknown

Left Ventricle Size? Normal 4a.x Small Unknown

Preoperative risk factors Cardio-pulmonary resuscitation 5. Select all that apply. Preoperative complete AV block 0 option(s) selected Preoperative/Preprocedural mechanical circulatory support (IABP,VAD, ECMO, or CPS) Shock, Persistent at time of surgery Shock, Resolved at time of surgery Diabetes mellitus Endocrine Abnormalites Hepatic dysfunction Necrotizing entero-colitis Failure to Thrive Malnutrition; as noted by the clinician in the History & Physical Greater than 2 hospital admissions for non- cardiac infections in last 3 months Previous History of Endocarditis Coagulation Disorder Neurological deficit Seizure Renal dysfunction Renal failure requiring dialysis Respiratory Failure not requiring ventilation Mechanical ventilation to treat cardiorespiratory failure Sepsis Pacemaker present Tracheostomy present None Other, Specify

Weight at Time of Surgery Kilograms Missing Reason: Clear 6. Closest to time of surgery. Unknown

Height at Time of Surgery Centimeters Missing Reason: Clear 7. Closest to time of surgery. Unknown Status at Operation Elective 8. Urgent Emergent Salvage

Was patient on cardiopulmonary Yes 9. bypass during operation? No If more than one period of cardiopulmonary bypass (CPB) is Unknown required during surgery add the minutes of all CPB together during surgery and enter the total CPB time.

Duration of Cardiopulmonary Minutes Missing Reason: 10a. Bypass Clear Unknown

Cross Clamp Time Minutes Missing Reason: Clear 10. Duration of cardiac ischemia. If more than one period of cross clamp time is required Not Done during surgery add the minutes of all cross clamp time together during surgery and enter the total cross clamp time. Unknown

Circulatory Arrest Time Minutes Missing Reason: Clear 11. If more than one period of circulatory arrest is required during surgery add the minutes of all circulatory arrest Not Done together during surgery and enter the total circulatory arrest time. Unknown

Selective Cerebral Perfusion Minutes Missing Reason: 12. Time Clear Not Done Duration of time in which perfusion was maintained selectively to the brain while the remainder of the body was under Unknown circulatory arrest.

Cardioplegia Type Buckberg 13. Check only one. Custodiol/Bretschneider (HTK) Del Nido Microplegia with Adenocaine Microplegia with Potassium Plegisol/St. Thomas Roe's Solution University of Wisconsin Other, specify

None

Was TEE used in the operation Yes 14. TEE: Transesophageal ECHO No Unknown

Was an epicardial echo done in Yes 15. this operation? No Unknown Was sternum left open at the Yes 16. end of operation? No Unknown

Were there any complications Yes 17. during the operation? No If patient experienced complications diagnosed during the Unknown operation, specify the complication(s).

Complications Arrhythmia requiring drug therapy 18a. Check all that apply. Arrhythmia requiring electrical cardioversion or All neurological complications including those defibrillation diagnosed in the operating room will be reported on the Post Operative Arrhythmia requiring permanent pacemaker Events Form. Bleeding 0 option(s) selected Cardiac dysfunction resulting in low cardiac output Cardiac failure (severe cardiac dysfunction) Mechanical circulatory support (IABP, VAD, ECMO, or CPS) Multi-System Organ Failure (MSOF) = Multi- Organ Dysfunction Syndrome (MODS) Seizure Unknown Other, specify

Intraoperative Mortality Yes 18. No

© 2020 World Database for Pediatric and Congenital Heart Surgery Not Started Tier 2 Surgery Form Print this Form

Date of Surgery DD/MM/YYYY

Primary Cardiac Procedure 1. Select the patient's primary surgical procedure. If the patient has multiple operating room visits, these should be reported on additional "New Surgery Forms".

Anomalous systemic venous connection Pulmonary AV fistula repair/occlusion Ligation, Pulmonary artery (PA) Anomalous systemic venous connection repair Pulmonary embolectomy, Acute pulmonary embolus (PE) Aortic Aneurysm Pulmonary embolectomy, Chronic pulmonary embolus (PE) Aortic aneurysm repair Procedures for Chylothorax Aortic Dissection Other, specify Aortic Dissection repair Mitral Valve Disease Aortic Root Replacement Supravalvar mitral ring repair: resection Aortic Root Replacement, Bioprosthetic Mitral Valve (MV) Repair (Left Atrioventricular Valve) Aortic Root Replacement, Mechanical Mitral Valve Replacement (Left Atrioventricular Valve) Aortic Root Replacement, Homograft Mitral Valve (MV) Replacement, Mechanical Aortic Root Replacement, Valve sparing Mitral Valve (MV) Replacement, Bioprosthetic Aortic Valve Disease Mitral Valve (MV) Replacement, Homograft Ross procedure Palliative Procedures Konno procedure (with and without aortic valve replacement) Shunt, Ligation and Takedown Ross Konno Procedure Shunt, Systemic to pulmonary, Modified Blalock-Taussig Shunt (MBTS) Repair of Supraaortic Stenosis Shunt, Systemic to pulmonary, Central (shunt from aorta) Other aortic annular enlargement procedure Shunt, Systemic to pulmonary, Other Aortic Valve Repair Pulmonary Artery banding (PAB) Aortic Valve Replacement Pulmonary Artery debanding Aortic Valve Replacement (AVR), Mechanical Damus-Kaye-Stansel procedure (DKS) (creation of Aorto-pulmonary anastomosis without arch reconstruction) Aortic Valve Replacement (AVR), Bioprosthetic Hepatic vein to azygous vein connection, Direct or with Interposition Graft Aortic Valve Replacement (AVR), Homograft Kawashima operation (superior cavopulmonary connection in setting of AP Window interrupted IVC with azygous continuation) Aorto-pulmonary (AP) window repair Bidirectional cavopulmonary anastomosis (BDCPA) (bidirectional Glenn) Pulmonary artery origin from ascending aorta (hemitruncus) repair Re-repair (within 90 days) ASD Partial Anomalous Pulmonary Venous Connection (PAPVC) Patent Foramen Ovale (PFO), Primary closure Partial Anomalous Pulmonary Venous Connection (PAPVC) Re-repair (within 90 days) Atrial Septal Defect (ASD) repair, Primary closure Atrial Septal Defect (ASD) repair, Patch Patent Ductus Arteriosus Atrial Septal Defect (ASD) repair, Partial closure Patent Ductus Arteriosus (PDA) closure, device Atrial Septal Defect (ASD) repair, Device Patent Ductus Arteriosus (PDA) closure, Surgical Atrial Septal Defect (ASD) repair, Patch + Partial anomalous pulmonary Pericardial Disease venous connection repair Pericardial drainage procedure Atrial Septal Defect (ASD), Common atrium (single atrium), Septation Pericardiectomy Atrial Septal Defect (ASD) creation/enlargement Pericardial procedure, Other Atrial Septal Fenestration Atrial fenestration closure Pulmonary Atresia/VSD Pulmonary atresia - VSD (including TOF, PA) repair AV Canal Pulmonary atresia - VSD – MAPCA repair, Complete single stage repair Common atrioventricular (AV) valve Repair (1 stage that includes pulmonary unifocalization + VSD closure + RV to PA Common atrioventricular (AV) valve Replacement connection [with or without conduit]) Atrioventricular (AV, AVSD) Septal Defect Re-repair (within 90 days) Pulmonary atresia - VSD – MAPCA repair, Status post prior complete unifocalization (includes VSD closure + RV to PA connection [with or without Cardiomyopathy conduit]) Transplant, Heart Transplant, Heart and lung Pulmonary atresia - VSD – MAPCA repair, Status post prior incomplete Coartaction of Aorta and Aortic arch hypoplasia unifocalization (includes completion of pulmonary unifocalization + VSD Coarctation repair + Ventricular Septal Defect repair closure + RV to PA connection [with or without conduit]) Aortic arch repair Unifocalization MAPCA(s), Bilateral pulmonary unifocalization Aortic arch repair + Ventricular Septal Defect repair Unifocalization MAPCA(s), Unilateral pulmonary unifocalization Coarctation Re-repair (within 90 days) Pulmonary Valve Disease Conduit Operations Pulmonary Valve (PV) Replacement, Mechanical Conduit placement, Right Ventricle (RV) to Pulmonary Artery (PA) (primary Pulmonary Valve (PV) Replacement, Bioprosthetic or reoperation) Pulmonary Valve (PV) Replacement, Homograft Conduit placement, Left Ventricle (LV) to Pulmonary Artery (PA) Pulmonary Valve (PV) Replacement, Other Conduit placement, Ventricle to aorta Pulmonary Valve (PV) Repair Congenitally Corrected TGA Pulmonary venous stenosis Congenitally corrected Transposition of the Great Arteries (TGA) repair, Pulmonary venous stenosis repair Atrial switch and ASO (double switch) Congenitally corrected Transposition of the Great Arteries (TGA) repair, Repair of Subaortic Stenosis Atrial switch and Rastelli Membrane Resection Congenitally corrected Transposition of the Great Arteries (TGA) repair, Myomectomy VSD closure Extended Myomectomy Congenitally corrected Transposition of the Great Arteries (TGA) repair, VSD closure and Left ventricular to Pulmonary Artery conduit RVOT Obstruction, IVS Pulmonary Stenosis Congenitally corrected Transposition of the Great Arteries (TGA) repair, Right ventricular Outflow Tract (RVOT) procedure and/or Transannular Other patch 1 1/2 ventricular repair Cor triatriatum Pulmonary Artery (PA), reconstruction, Main Cor triatriatum repair Pulmonary Artery (PA), reconstruction, Central Coronary Artery Anomalies Pulmonary Artery (PA), reconstruction, Peripheral Coronary artery fistula ligation Double Chamber Right Ventricle (DCRV) Anomalous origin of coronary artery from pulmonary artery repair Single Ventricle Coronary artery bypass (CABG) Fontan revision or conversion (Re-do Fontan) Anomalous aortic origin of coronary artery (AAOCA) repair Ventricular septation Coronary artery procedure, Other Fontan Re-repair (within 90 days) DOLV Sinus of Valsalva Aneurysm Double Outlet Left Ventricle repair (DOLV) Sinus of Valsalva, Aneurysm repair DORV Systemic venous obstruction Double Outlet Right Ventricle (DORV), Intraventricular tunnel repair Systemic venous stenosis repair Electrophysiological Tetralogy of Fallot Repair Pacemaker implantation, Permanent Tetralogy of Fallot (TOF) repair/Atrioventricular septal defect (AVSD) repair ICD (AICD) implantation Tetralogy of Fallot (TOF) - Absent pulmonary valve (PV) repair Arrhythmia surgery - atrial, Surgical Ablation Tetralogy of Fallot (TOF) Re-repair (within 90 days) Arrhythmia surgery - ventricular, Surgical Ablation Total Anomalous Pulmonary Venous Connection (TAPVC) Hybrid Total Anomalous Pulmonary Venous Connection (TAPVC) Re-repair (within Hybrid Approach "Stage 1", Application of RPA & LPA bands 90 days) Hybrid Approach "Stage 1", Stent placement in arterial duct (PDA) Transposition of the Great Arteries Hybrid Approach "Stage 1", Stent placement in arterial duct (PDA) + application of RPA & LPA bands Arterial switch operation (ASO) and VSD repair Hybrid approach "Stage 2", Aortopulmonary amalgamation + Superior Arterial switch procedure + Aortic arch repair Cavopulmonary anastomosis(es) + PA Debanding + Aortic arch repair Arterial switch procedure and VSD repair + Aortic arch repair (Norwood [Stage 1] + Superior Cavopulmonary anastomosis(es) + PA Arterial switch operation (ASO) Re-repair (within 90 days) Debanding) Senning Hybrid approach "Stage 2", Aortopulmonary amalgamation + Superior Cavopulmonary anastomosis(es) + PA Debanding + Without aortic arch repair Mustard Hybrid Approach, Transcardiac balloon dilatation Atrial baffle procedure, Mustard or Senning revision Hybrid Approach, Transcardiac balloon dilatation Rastelli Hybrid Approach, Transcardiac transcatheter device placement Reparation A L Etage Ventriculaire (REV) Hypoplastic Left Heart and Related malformations Aortic root translocation over left ventricle (Including Nikaidoh procedure) Transposition of the Great Arteries (TGA), Other procedures (Kawashima, Conduit insertion right ventricle (RV) to pulmonary artery (PA) + Left Ventricular to Pulmonary Artery conduit, other) Intraventricular tunnel left ventricle (LV) to neoaorta + arch reconstruction (Rastelli and Norwood type arch reconstruction) (Yasui) Tricuspid Valve Disease and Ebstein's Anomaly Norwood procedure Re-repair (within 90 days) Tricuspid Valve (TV) Replacement (Right Atrioventricular Valve) Interrupted Arch Tricuspid Valve (TV) Repair (Right Atrioventricular Valve) Interrupted aortic arch repair Ebstein's Re-repair (within 90 days) LV to Aorta Tunnel Truncus Arteriosus LV to aorta tunnel repair Truncal Valve Repair Mechanical Support Truncal Valve Replacement Truncus + Interrupted aortic arch repair (IAA) repair Extracorporeal membrane oxygenation (ECMO) Cannulation Truncus arteriosus Re-repair (within 90 days) Extracorporeal membrane oxygenation (ECMO) Decannulation Right Heart Temporary Ventricular Assist Device (RVAD) Vascular Rings and Slings Right Heart Long-Term Ventricular Assist Device (RVAD) Vascular ring repair Left Heart Temporary Ventricular Assist Device (LVAD) Aortopexy Left Heart Long-Term Ventricular Assist Device (LVAD) Pulmonary artery (PA) sling repair Total Artificial Heart (TAH) VSD Miscellaneous Procedures Ventricular septal patch fenestration Aneurysm, Ventricular, Right, Repair Ventricular Septal Defect (VSD) Re-repair (within 90 days) Aneurysm, Ventricular, Left, Repair Aneurysm, Pulmonary artery (PA), Repair Cardiac tumor resection

Were there any additional Cardiac Yes 2. Procedures during the same OR No visit? Unknown

Additional Cardiac Procedures during the same OR visit 2a. (Check all that apply)

0 option(s) selected

Anomalous systemic venous connection Mitral Valve (MV) Repair (Left Atrioventricular Valve) Anomalous systemic venous connection repair Mitral Valve Replacement (Left Atrioventricular Valve) Aortic Aneurysm Mitral Valve (MV) Replacement, Mechanical Mitral Valve (MV) Replacement, Bioprosthetic Aortic aneurysm repair Mitral Valve (MV) Replacement, Homograft Aortic Dissection Palliative Procedures Aortic Dissection repair Shunt, Ligation and Takedown Aortic Root Replacement Shunt, Systemic to pulmonary, Modified Blalock-Taussig Shunt Aortic Root Replacement, Bioprosthetic (MBTS) Aortic Root Replacement, Mechanical Shunt, Systemic to pulmonary, Central (shunt from aorta) Aortic Root Replacement, Homograft Shunt, Systemic to pulmonary, Other Aortic Root Replacement, Valve sparing Pulmonary Artery banding (PAB) Aortic Valve Disease Pulmonary Artery debanding Ross procedure Damus-Kaye-Stansel procedure (DKS) (creation of Aorto- pulmonary anastomosis without arch reconstruction) Konno procedure (with and without aortic valve replacement) Bidirectional cavopulmonary anastomosis (BDCPA) (bidirectional Ross Konno Procedure Glenn) Repair of Supraaortic Stenosis Glenn (unidirectional cavopulmonary anastomosis) Other aortic annular enlargement procedure (unidirectional Glenn) Aortic Valve Repair Bilateral bidirectional cavopulmonary anastomosis (BBDCPA) (bilateral bidirectional Glenn) Aortic Valve Replacement Hemi-Fontan Aortic Valve Replacement (AVR), Mechanical Hepatic vein to azygous vein connection, Direct or with Aortic Valve Replacement (AVR), Bioprosthetic Interposition Graft Aortic Valve Replacement (AVR), Homograft Kawashima operation (superior cavopulmonary connection in setting of interrupted IVC with azygous continuation) AP Window Bidirectional cavopulmonary anastomosis (BDCPA) (bidirectional Aorto-pulmonary (AP) window repair Glenn) Re-repair (within 90 days) Pulmonary artery origin from ascending aorta (hemitruncus) repair Partial Anomalous Pulmonary Venous Connection ASD Partial Anomalous Pulmonary Venous Connection (PAPVC) repair Patent Foramen Ovale (PFO), Primary closure Partial Anomalous Pulmonary Venous Connection (PAPVC), Atrial Septal Defect (ASD) repair, Primary closure Scimitar, Repair Atrial Septal Defect (ASD) repair, Patch PAPVC repair, Baffle redirection to left atrium with systemic vein translocation (Warden) (SVC sewn to right atrial appendage) Atrial Septal Defect (ASD) repair, Partial closure Partial Anomalous Pulmonary Venous Connection (PAPVC) Re- Atrial Septal Defect (ASD) repair, Device repair (within 90 days) Atrial Septal Defect (ASD) repair, Patch + Partial anomalous pulmonary venous connection repair Patent Ductus Arteriosus Atrial Septal Defect (ASD), Common atrium (single atrium), Patent Ductus Arteriosus (PDA) closure, device Septation Patent Ductus Arteriosus (PDA) closure, Surgical Atrial Septal Defect (ASD) creation/enlargement Pericardial Disease Atrial Septal Fenestration Pericardial drainage procedure Atrial fenestration closure Pericardiectomy AV Canal Pericardial procedure, Other Atrioventricular (AV, AVSD) Septal Repair, Complete Pulmonary Atresia/VSD Atrioventricular (AV, AVSD) Septal Repair , Intermediate (Transitional) Pulmonary atresia - VSD (including TOF, PA) repair Atrioventricular (AV, AVSD) Septal Repair , Partial (Incomplete) Pulmonary atresia - VSD – MAPCA repair, Complete single stage (PAVSD) repair (1 stage that includes pulmonary unifocalization + VSD closure + RV to PA connection [with or without conduit]) Common atrioventricular (AV) valve Repair Pulmonary atresia - VSD – MAPCA repair, Status post prior Common atrioventricular (AV) valve Replacement complete unifocalization (includes VSD closure + RV to PA Atrioventricular (AV, AVSD) Septal Defect Re-repair (within 90 connection [with or without conduit]) days) Pulmonary atresia - VSD – MAPCA repair, Status post prior Cardiomyopathy incomplete unifocalization (includes completion of pulmonary unifocalization + VSD closure + RV to PA connection [with or without Transplant, Heart conduit]) Transplant, Heart and lung Unifocalization MAPCA(s), Bilateral pulmonary unifocalization Coartaction of Aorta and Aortic arch hypoplasia Unifocalization MAPCA(s), Unilateral pulmonary unifocalization Coarctation repair, End to end Pulmonary Valve Disease Coarctation repair, End to end, Extended Pulmonary Valve (PV) Replacement, Mechanical Coarctation repair, Subclavian flap Pulmonary Valve (PV) Replacement, Bioprosthetic Coarctation repair, Patch aortoplasty Pulmonary Valve (PV) Replacement, Homograft Coarctation repair, Interposition graft Pulmonary Valve (PV) Replacement, Other Coarctation repair, Other Pulmonary Valve (PV) Repair Coarctation repair + Ventricular Septal Defect repair Pulmonary venous stenosis Aortic arch repair Pulmonary venous stenosis repair Aortic arch repair + Ventricular Septal Defect repair Coarctation repair, Extra-anatomic Bypass Repair of Subaortic Stenosis Coarctation Re-repair (within 90 days) Membrane Resection Conduit Operations Myomectomy Extended Myomectomy Conduit placement, Right Ventricle (RV) to Pulmonary Artery (PA) (primary or reoperation) RVOT Obstruction, IVS Pulmonary Stenosis Conduit placement, Left Ventricle (LV) to Pulmonary Artery (PA) Right ventricular Outflow Tract (RVOT) procedure and/or Conduit placement, Ventricle to aorta Transannular patch Congenitally Corrected TGA 1 1/2 ventricular repair Pulmonary Artery (PA), reconstruction, Main Congenitally corrected Transposition of the Great Arteries (TGA) repair, Atrial switch and ASO (double switch) Pulmonary Artery (PA), reconstruction, Central Congenitally corrected Transposition of the Great Arteries (TGA) Pulmonary Artery (PA), reconstruction, Peripheral repair, Atrial switch and Rastelli Double Chamber Right Ventricle (DCRV) Congenitally corrected Transposition of the Great Arteries (TGA) Single Ventricle repair, VSD closure Congenitally corrected Transposition of the Great Arteries (TGA) Fontan Operation (Complete Cavo-pulmonary anastomosis), repair, VSD closure and Left ventricular to Pulmonary Artery conduit Extracardiac Type: Fenestrated Congenitally corrected Transposition of the Great Arteries (TGA) Fontan Operation (Complete Cavo-pulmonary anastomosis), repair, Other Extracardiac Type: Non-fenestrated Fontan Operation (Complete Cavo-pulmonary anastomosis), Cor triatriatum Lateral Tunnel Type Cor triatriatum repair Fontan Operation (Complete Cavo-pulmonary anastomosis), Extra/Intra Cardiac Type Coronary Artery Anomalies Fontan Operation (Complete Cavo-pulmonary anastomosis), Coronary artery fistula ligation Internal Conduit Type Anomalous origin of coronary artery from pulmonary artery repair Coronary artery bypass (CABG) Fontan Operation (Complete Cavo-pulmonary anastomosis), Anomalous aortic origin of coronary artery (AAOCA) repair Other Coronary artery procedure, Other Fontan revision or conversion (Re-do Fontan) Fontan, Other DOLV Ventricular septation Double Outlet Left Ventricle repair (DOLV) Fontan Re-repair (within 90 days) DORV Sinus of Valsalva Aneurysm Double Outlet Right Ventricle (DORV), Intraventricular tunnel Sinus of Valsalva, Aneurysm repair repair Systemic venous obstruction Electrophysiological Systemic venous stenosis repair Pacemaker implantation, Permanent ICD (AICD) implantation Tetralogy of Fallot Repair Arrhythmia surgery - atrial, Surgical Ablation Tetralogy of Fallot (TOF) repair Arrhythmia surgery - ventricular, Surgical Ablation Tetralogy of Fallot (TOF) repair, Ventriculotomy Hybrid Tetralogy of Fallot (TOF) repair, Transannular patch Tetralogy of Fallot (TOF) repair, RV-PA conduit Hybrid Approach "Stage 1", Application of RPA & LPA bands Tetralogy of Fallot (TOF) repair/Atrioventricular septal defect Hybrid Approach "Stage 1", Stent placement in arterial duct (PDA) (AVSD) repair Hybrid Approach "Stage 1", Stent placement in arterial duct (PDA) Tetralogy of Fallot (TOF) - Absent pulmonary valve (PV) repair + application of RPA & LPA bands Tetralogy of Fallot (TOF) repair, Pulmonary Artery (PA) Hybrid approach "Stage 2", Aortopulmonary amalgamation + Reconstruction Superior Cavopulmonary anastomosis(es) + PA Debanding + Aortic arch repair (Norwood [Stage 1] + Superior Cavopulmonary Tetralogy of Fallot (TOF) repair, Valvotomy anastomosis(es) + PA Debanding) Tetralogy of Fallot (TOF) Re-repair (within 90 days) Hybrid approach "Stage 2", Aortopulmonary amalgamation + Total Anomalous Pulmonary Venous Connection Superior Cavopulmonary anastomosis(es) + PA Debanding + Without aortic arch repair Hybrid Approach, Transcardiac balloon Total Anomalous Pulmonary Venous Connection (TAPVC) repair dilatation Total Anomalous Pulmonary Venous Connection (TAPVC) Re- Hybrid Approach, Transcardiac balloon dilatation repair (within 90 days) Hybrid Approach, Transcardiac transcatheter device placement Transposition of the Great Arteries Hypoplastic Left Heart and Related malformations Arterial switch operation (ASO) Norwood procedure (w/mBT shunt) Arterial switch operation (ASO) and VSD repair Norwood procedure (RV-PA Conduit) Arterial switch procedure + Aortic arch repair Conduit insertion right ventricle (RV) to pulmonary artery (PA) + Arterial switch procedure and VSD repair + Aortic arch repair Intraventricular tunnel left ventricle (LV) to neoaorta + arch Arterial switch operation (ASO) Re-repair (within 90 days) reconstruction (Rastelli and Norwood type arch reconstruction) Senning (Yasui) Mustard Norwood procedure Re-repair (within 90 days) Atrial baffle procedure, Mustard or Senning revision Interrupted Arch Rastelli Interrupted aortic arch repair Reparation A L Etage Ventriculaire (REV) LV to Aorta Tunnel Aortic root translocation over left ventricle (Including Nikaidoh procedure) LV to aorta tunnel repair Transposition of the Great Arteries (TGA), Other procedures Mechanical Support (Kawashima, Left Ventricular to Pulmonary Artery conduit, other) Extracorporeal membrane oxygenation (ECMO) Cannulation Tricuspid Valve Disease and Ebstein's Anomaly Extracorporeal membrane oxygenation (ECMO) Decannulation Ebstein's repair Right Heart Temporary Ventricular Assist Device (RVAD) Tricuspid Valve (TV) Replacement (Right Atrioventricular Valve) Right Heart Long-Term Ventricular Assist Device (RVAD) Tricuspid Valve (TV) Repair (Right Atrioventricular Valve) Left Heart Temporary Ventricular Assist Device (LVAD) Ebstein's Re-repair (within 90 days) Left Heart Long-Term Ventricular Assist Device (LVAD) Total Artificial Heart (TAH) Truncus Arteriosus Truncus arteriosus repair Miscellaneous Procedures Truncal Valve Repair Aneurysm, Ventricular, Right, Repair Truncal Valve Replacement Aneurysm, Ventricular, Left, Repair Truncus + Interrupted aortic arch repair (IAA) repair Aneurysm, Pulmonary artery (PA), Repair Truncus arteriosus Re-repair (within 90 days) Cardiac tumor resection Pulmonary AV fistula repair/occlusion Vascular Rings and Slings Ligation, Pulmonary artery (PA) Vascular ring repair Pulmonary embolectomy, Acute pulmonary embolus (PE) Aortopexy Pulmonary embolectomy, Chronic pulmonary embolus (PE) Pulmonary artery (PA) sling repair Procedures for Chylothorax VSD Other, specify Ventricular Septal Defect (VSD) repair, Primary closure Mitral Valve Disease Ventricular Septal Defect (VSD) repair, Patch Ventricular Septal Defect (VSD) repair, Device Supravalvar mitral ring repair: resection Ventricular Septal Defect (VSD), Multiple, Repair Ventricular Septal Defect (VSD) creation/enlargement Ventricular septal patch fenestration Ventricular Septal Defect (VSD) Re-repair (within 90 days)

Primary Cardiac Diagnosis 3. Related to this surgery (Check only one). Select the structural heart disease (such as aortic stenosis, valvar) as the primary diagnosis. Other diagnoses (such as rheumatic heart disease) will be listed as additional diagnoses.

Anomalous Systemic Venous Connection Mitral Valve Disease Systemic venous anomaly Mitral stenosis (Annular Hypoplasia) Aortic Aneurysm Mitral stenosis, Subvalvar Mitral stenosis, Subvalvar, Parachute Aortic aneurysm (including pseudoaneurysm) Mitral stenosis, Supravalvar mitral ring Aortic dissection Mitral stenosis, Valvar Aortic dissection Mitral regurgitation Aortic Valve Disease Mitral regurgitation and mitral stenosis Aortic stenosis, Subvalvar Mitral valve (MV), Other Aortic stenosis, Valvar Partial anomalous pulmonary venous connection Aortic stenosis, Supravalvar Partial anomalous pulmonary venous connection (PAPVC) Aortic valve atresia Partial anomalous pulmonary venous connection (PAPVC), scimitar Aortic insufficiency Patent ductus arteriosus Aortic insufficiency and aortic stenosis Patent ductus arteriosus (PDA) Aortic valve, Other Pericardial Disease AP Window Pericardial Disease (Non Specific) Aorto-pulmonary (AP) window (aortopulmonary window) Pulmonary artery origin from ascending aorta (hemitruncus) Pulmonary atresia ASD Pulmonary atresia Pulmonary atresia, Intact Ventricular Septum Patent oval foramen (patent foramen ovale) (PFO) Pulmonary atresia, VSD (Including TOF, PA) Atrial Septal Defect (ASD), Secundum Pulmonary atresia, Ventriuclar Septal Defect (VSD) - Multiple aorto- Atrial Septal Defect (ASD), Venosus pulmonary collateral artery Atrial Septal Defect (ASD), Coronary Sinus Pulmonary atresia MAPCA(s) (major aortopulmonary collateral[s]) Atrial Septal Defect (ASD), Common Atrium (single Atrium) (without PA-VSD) AV Canal Pulmonary Valve Disease Atrioventricular (AV) Canal Defect, Intermediate (transitional) Pulmonary insufficiency Atrioventricular (AV) Canal Defect, Partial (incomplete) (PAVSD) (ASD, Pulmonary valve, Other primum) Pulmonary insufficiency and pulmonary stenosis Complete Atrioventricular (AV) Canal Defect Pulmonary venous stenosis Cardiomyopathy Pulmonary venous stenosis Cardiomyopathy (including dilated, restrictive, and hypertrophic) Cardiomyopathy, End-stage congenital heart disease RVOT Obstruction and/or Pulmonary Stenosis Pulmonary stenosis, Valvar Coarctation of Aorta and Aortic arch hypoplasia Pulmonary stenosis, Subvalvar Coarctation of aorta Pulmonary artery stenosis (hypoplasia), Main (trunk) (Supravalvalar Aortic arch hypoplasia Stenosis) Ventricular Septal Defect (VSD) + Aortic arch hypoplasia Pulmonary artery stenosis, Branch, Central (within the hilar bifurcation) Ventricular Septal Defect (VSD) + Coarctation of aorta Pulmonary artery stenosis, Branch, Peripheral (at or beyond the hilar bifurcation) Conduit Failure Pulmonary artery, Discontinuous Conduit Failure Double Chamber Right Ventricle (DCRV) Congenitally Corrected TGA Shone’s syndrome Congenitally corrected Transposition of the Great Arteries (TGA), Intact Ventricular Septum (IVS) Shone’s syndrome Congenitally corrected Transposition of the Great Arteries (TGA) Shunt Failure Congenitally Corrected TGA Congenitally corrected Transposition of the Shunt Failure Great Arteries (TGA), Intact Ventricular Septum (IVS)-Left Ventricular Outflow Tract (LVOT) Obstruction Single Ventricle Congenitally Corrected TGA Congenitally corrected Transposition of the Single ventricle, Double Inlet left ventricle (DILV) Great Arteries (TGA), Ventricular Septal Defect (VSD) Single ventricle, Double Inlet Right Ventricle (DIRV) Congenitally Corrected TGA Congenitally corrected Transposition of the Single ventricle, Mitral atresia Great Arteries (TGA), Ventricular Septal Defect (VSD)-Left Ventricular Outflow Single ventricle, Unbalanced Atrio-ventricular canal (AV Canal) Defect Tract (LVOT) Obstruction Single ventricle, Heterotaxia syndrome Cor triatriatum Single ventricle, Other Cor triatriatum Single ventricle + Total anomalous pulmonary venous connection (TAPVC) Coronary Artery Anomalies Single ventricle, Tricuspid atresia Coronary artery anomaly, Aneurysm Sinus of Valsalva Fistula/Aneurysm Coronary artery anomaly, Anomalous aortic origin of coronary artery Sinus of Valsalva aneurysm (AAOCA) (AAOCA) Systemic venous obstruction Coronary artery anomaly, Anomalous pulmonary origin (includes ALCAPA) Systemic venous obstruction Coronary artery anomaly, Fistula Coronary artery anomaly, Other Tetralogy of Fallot DOLV Tetralogy of Fallot (TOF) Tetralogy of Fallot (TOF), Pulmonary stenosis Double Outlet Left Ventricle (DOLV) Tetralogy of Fallot (TOF), complete Atrio-ventricular (AV) septal Defect DORV Tetralogy of Fallot (TOF), Absent pulmonary valve Double Outlet Right Ventricle (DORV) Total anomalous pulmonary venous connection Double Outlet Right Ventricle (DORV), Atrioventricular (AV) Septal Defect Total anomalous pulmonary venous connection (TAPVC), Type 1 Double Outlet Right Ventricle (DORV), Intact Ventricular Septum (IVS) (supracardiac) Double Outlet Right Ventricle (DORV), Remote VSD (Uncommitted) Total anomalous pulmonary venous connection (TAPVC), Type 2 (cardiac) Double Outlet Right Ventricle (DORV), Tetralogy of Fallot (TOF) type Total anomalous pulmonary venous connection (TAPVC), Type 3 Double Outlet Right Ventricle (DORV), Transposition of Great Arteries (infracardiac) (TGA) Type Total anomalous pulmonary venous connection (TAPVC), Type 4 (mixed) Electrophysiological Transposition of the Great Arteries Arrhythmia Transposition of the Great Arteries (TGA), Intact Ventricular Septum (IVS)- Arrhythmia, atrial Left Ventricular Outflow Tract (LVOT) Obstruction Arrhythmia, heart block Transposition of the Great Arteries (TGA), Ventricular Septal Defect (VSD) Arrhythmia, ventricular Transposition of the Great Arteries (TGA), Intact Ventricular Septum (IVS) Hypoplastic left heart syndrome Transposition of the Great Arteries (TGA), Ventricular Septal Defect (VSD)- Left Ventricular Outflow Tract (LVOT) Obstruction Hypoplastic left heart syndrome (HLHS) Tricuspid Valve Disease and Ebstein's Anomaly Interrupted Arch Ebstein's anomaly Interrupted aortic arch (IAA) Tricuspid regurgitation, non-Ebstein's related Interrupted aortic arch (IAA) + Aorto-Pulmonary window Tricuspid regurgitation and tricuspid stenosis Interrupted aortic arch (IAA) + Ventricular Septal Defect (VSD) Tricuspid stenosis LV to Aorta Tunnel Tricuspid valve (TV), Other Left Ventricular to aorta tunnel Truncus arteriosus Miscellaneous, Other Truncus arteriosus Atrial Isomerism, Left Truncus arteriosus + Interrupted aortic arch (IAA) Atrial Isomerism, Right Truncal valve insufficiency Dextrocardia Vascular rings and Slings Levocardia Vascular Ring Mesocardia Pulmonary Artery (PA) Sling Aneurysm, Pulmonary artery Prosthetic valve failure VSD Cardiac trauma VSD Ventricular Septal Defect (VSD), Type 1 (Subarterial) (Supracristal) Cardiac tumor (Conal septal defect) (Infundibular) Pulmonary vascular obstructive disease (Eisenmenger’s) VSD Ventricular Septal Defect (VSD), Type 2 (Perimembranous) (Paramembranous) (Conoventricular) Prosthetic valve Endocarditis VSD Ventricular Septal Defect (VSD), Type 3 (Inlet) (AV canal type) Situs inversus VSD Ventricular Septal Defect (VSD), Type 4 (Muscular) Aneurysm, Other VSD Ventricular Septal Defect (VSD), Type: Gerbode type (LV-RA Aneurysm, Ventricular, Left (including pseudoaneurysm) communication) Aneurysm, Ventricular, Right (including pseudoaneurysm) VSD Ventricular Septal Defect (VSD), Multiple Other, Specify

Aortic Arch Coarctation? Yes 3a.i No Unknown

Aortic Arch Hypoplasia? Yes 3a.ii No Unknown

Aortic Valve Atresia? Yes 3a.iii No Unknown

Aortic Valve Stenosis? Yes 3a.iv No Unknown

Aortic Valve Hypoplasia? Yes 3a.v No Unknown

Mitral Valve Atresia? Yes 3a.vi No Unknown

Mitral Valve Stenosis? Yes 3a.vii No Unknown

Mitral Valve Hypoplasia? Yes 3a.viii No Unknown

Ventricular Septal Defect? Yes 3a.ix No Unknown

Left Ventricle Size? Normal 3a.x Small Unknown

Are there any additional Cardiac Yes 4. Diagnoses? No Unknown

4a. Additional Cardiac Diagnoses Check all that apply. List the structural heart disease (such as aortic stenosis, valvar) as the primary diagnosis and other diagnoses (such as rheumatic heart disease) here.

0 option(s) selected

Anomalous Systemic Venous Connection Aneurysm, Ventricular, Right (including pseudoaneurysm) Systemic venous anomaly Mitral Valve Disease Aortic Aneurysm Mitral stenosis (Annular Hypoplasia) Mitral stenosis, Subvalvar Aortic aneurysm (including pseudoaneurysm) Mitral stenosis, Subvalvar, Parachute Aortic dissection Mitral stenosis, Supravalvar mitral ring Aortic dissection Mitral stenosis, Valvar Aortic Valve Disease Mitral regurgitation Aortic stenosis, Subvalvar Mitral regurgitation and mitral stenosis Aortic stenosis, Valvar Mitral valve (MV), Other Aortic stenosis, Supravalvar Partial anomalous pulmonary venous connection Aortic valve atresia Pericardial Disease (Non Specific) Aortic insufficiency Partial anomalous pulmonary venous connection (PAPVC) Aortic insufficiency and aortic stenosis Partial anomalous pulmonary venous connection (PAPVC), Aortic valve, Other scimitar AP Window Patent ductus arteriosus Aorto-pulmonary (AP) window (aortopulmonary window) Patent ductus arteriosus (PDA) Pulmonary artery origin from ascending aorta (hemitruncus) Pericardial Disease ASD Pulmonary atresia Patent oval foramen (patent foramen ovale) (PFO) Pulmonary atresia Atrial Septal Defect (ASD), Secundum Pulmonary atresia, Intact Ventricular Septum Atrial Septal Defect (ASD), Venosus Pulmonary atresia, VSD (Including TOF, PA) Atrial Septal Defect (ASD), Coronary Sinus Pulmonary atresia, Ventriuclar Septal Defect (VSD) - Multiple Atrial Septal Defect (ASD), Common Atrium (single Atrium) aorto-pulmonary collateral artery AV Canal Pulmonary atresia MAPCA(s) (major aortopulmonary collateral[s]) (without PA-VSD) Atrioventricular (AV) Canal Defect, Intermediate (transitional) Atrioventricular (AV) Canal Defect, Partial (incomplete) (PAVSD) Pulmonary Valve Disease (ASD, primum) Pulmonary insufficiency Complete Atrioventricular (AV) Canal Defect Pulmonary valve, Other Cardiomyopathy Pulmonary insufficiency and pulmonary stenosis Cardiomyopathy (including dilated, restrictive, and hypertrophic) Pulmonary venous stenosis Cardiomyopathy, End-stage congenital heart disease Pulmonary venous stenosis Coarctation of Aorta and Aortic arch hypoplasia RVOT Obstruction and/or Pulmonary Stenosis Coarctation of aorta Pulmonary stenosis, Valvar Aortic arch hypoplasia Pulmonary stenosis, Subvalvar Ventricular Septal Defect (VSD) + Aortic arch hypoplasia Pulmonary artery stenosis (hypoplasia), Main (trunk) Ventricular Septal Defect (VSD) + Coarctation of aorta (Supravalvalar Stenosis) Pulmonary artery stenosis, Branch, Central (within the hilar Conduit Failure bifurcation) Conduit Failure Pulmonary artery stenosis, Branch, Peripheral (at or beyond the Congenitally Corrected TGA hilar bifurcation) Congenitally corrected Transposition of the Great Arteries (TGA), Pulmonary artery, Discontinuous Intact Ventricular Septum (IVS) Double Chamber Right Ventricle (DCRV) Congenitally corrected Transposition of the Great Arteries (TGA) Shone’s syndrome Congenitally Corrected TGA Congenitally corrected Transposition Shone’s syndrome of the Great Arteries (TGA), Intact Ventricular Septum (IVS)-Left Ventricular Outflow Tract (LVOT) Obstruction Shunt Failure Congenitally Corrected TGA Congenitally corrected Transposition Shunt Failure of the Great Arteries (TGA), Ventricular Septal Defect (VSD) Congenitally Corrected TGA Congenitally corrected Transposition Single Ventricle of the Great Arteries (TGA), Ventricular Septal Defect (VSD)-Left Single ventricle, Double Inlet left ventricle (DILV) Ventricular Outflow Tract (LVOT) Obstruction Single ventricle, Double Inlet Right Ventricle (DIRV) Cor triatriatum Single ventricle, Mitral atresia Cor triatriatum Single ventricle, Unbalanced Atrio-ventricular canal (AV Canal) Defect Coronary Artery Anomalies Single ventricle, Heterotaxia syndrome Coronary artery anomaly, Aneurysm Single ventricle, Other Coronary artery anomaly, Anomalous aortic origin of coronary Single ventricle + Total anomalous pulmonary venous connection artery (AAOCA) (AAOCA) (TAPVC) Coronary artery anomaly, Anomalous pulmonary origin (includes Single ventricle, Tricuspid atresia ALCAPA) Coronary artery anomaly, Fistula Sinus of Valsalva Fistula/Aneurysm Coronary artery anomaly, Other Sinus of Valsalva aneurysm DOLV Systemic venous obstruction Double Outlet Left Ventricle (DOLV) Systemic venous obstruction DORV Tetralogy of Fallot Double Outlet Right Ventricle (DORV) Tetralogy of Fallot (TOF) Double Outlet Right Ventricle (DORV), Atrioventricular (AV) Septal Tetralogy of Fallot (TOF), Pulmonary stenosis Defect Tetralogy of Fallot (TOF), complete Atrio-ventricular (AV) septal Double Outlet Right Ventricle (DORV), Intact Ventricular Septum Defect (IVS) Tetralogy of Fallot (TOF), Absent pulmonary valve Double Outlet Right Ventricle (DORV), Remote VSD (Uncommitted) Total anomalous pulmonary venous connection Double Outlet Right Ventricle (DORV), Tetralogy of Fallot (TOF) Total anomalous pulmonary venous connection (TAPVC), Type 1 type (supracardiac) Double Outlet Right Ventricle (DORV), Transposition of Great Total anomalous pulmonary venous connection (TAPVC), Type 2 Arteries (TGA) Type (cardiac) Total anomalous pulmonary venous connection (TAPVC), Type 3 Electrophysiological (infracardiac) Arrhythmia Total anomalous pulmonary venous connection (TAPVC), Type 4 Arrhythmia, atrial (mixed) Arrhythmia, heart block Transposition of the Great Arteries Arrhythmia, ventricular Transposition of the Great Arteries (TGA), Intact Ventricular Hypoplastic left heart syndrome Septum (IVS)-Left Ventricular Outflow Tract (LVOT) Obstruction Hypoplastic left heart syndrome (HLHS) Transposition of the Great Arteries (TGA), Ventricular Septal Defect (VSD) Interrupted Arch Transposition of the Great Arteries (TGA), Intact Ventricular Interrupted aortic arch (IAA) Septum (IVS) Interrupted aortic arch (IAA) + Aorto-Pulmonary window Transposition of the Great Arteries (TGA), Ventricular Septal Interrupted aortic arch (IAA) + Ventricular Septal Defect (VSD) Defect (VSD)-Left Ventricular Outflow Tract (LVOT) Obstruction LV to Aorta Tunnel Tricuspid Valve Disease and Ebstein's Anomaly Left Ventricular to aorta tunnel Ebstein's anomaly Tricuspid regurgitation, non-Ebstein's related Miscellaneous, Other Tricuspid regurgitation and tricuspid stenosis Atrial Isomerism, Left Tricuspid stenosis Atrial Isomerism, Right Tricuspid valve (TV), Other Dextrocardia Levocardia Truncus arteriosus Mesocardia Truncus arteriosus Aneurysm, Pulmonary artery Truncus arteriosus + Interrupted aortic arch (IAA) Prosthetic valve failure Truncal valve insufficiency Cardiac tumor Vascular rings and Slings Pulmonary vascular obstructive disease (Eisenmenger’s) Vascular Ring Prosthetic valve Endocarditis Pulmonary Artery (PA) Sling Active Endocarditis VSD Rheumatic Heart Disease VSD Ventricular Septal Defect (VSD), Type 1 (Subarterial) Situs inversus (Supracristal) (Conal septal defect) (Infundibular) Aneurysm, Other VSD Ventricular Septal Defect (VSD), Type 2 (Perimembranous) Aneurysm, Ventricular, Left (including pseudoaneurysm) (Paramembranous) (Conoventricular) VSD Ventricular Septal Defect (VSD), Type 3 (Inlet) (AV canal type) VSD Ventricular Septal Defect (VSD), Type 4 (Muscular) VSD Ventricular Septal Defect (VSD), Type: Gerbode type (LV-RA communication) VSD Ventricular Septal Defect (VSD), Multiple

Aortic Arch Coarctation? Yes 4a.i No Unknown

Aortic Arch Hypoplasia? Yes 4a.ii No Unknown

Aortic Valve Atresia? Yes 4a.iii No Unknown

Aortic Valve Stenosis? Yes 4a.iv No Unknown

Aortic Valve Hypoplasia? Yes 4a.v No Unknown

Mitral Valve Atresia? Yes 4a.vi No Unknown

Mitral Valve Stenosis? Yes 4a.vii No Unknown

Mitral Valve Hypoplasia? Yes 4a.viii No Unknown

Ventricular Septal Defect? Yes 4a.ix No Unknown

Left Ventricle Size? Normal 4a.x Small Unknown

Intraoperative Mortality Yes 5. No

© 2020 World Database for Pediatric and Congenital Heart Surgery

Not Started Post Operative Events Form Print this Form

Did the patient have a post- Yes 1. operative complication associated No with this Tier 1 surgery? Unknown All questions on this form are pertaining to events that happened post surgery and pre discharge. Any events that happen after discharge should be reported on the annual follow-up form.

Specify complication(s) 1a. Check all that apply.

0 option(s) selected

Arrhythmia requiring drug therapy Pneumonia Arrhythmia requiring electrical cardioversion or defibrillation Postoperative/Postprocedural respiratory insufficiency requiring Arrhythmia requiring permanent pacemaker mechanical ventilatory support > 7 days Bleeding, requiring reoperation Postoperative/Postprocedural respiratory insufficiency requiring reintubation Cardiac dysfunction resulting in low cardiac output Pulmonary vein obstruction Cardiac failure (severe cardiac dysfunction) Renal failure - acute renal failure, Acute renal failure requiring Chylothorax or pleural effusions requiring drainage dialysis at the time of hospital discharge or 91 days if patient is still in Endocarditis-postprocedural infective endocarditis hospital Intraventricular hemorrhage (IVH) > grade 2 Renal failure - acute renal failure, Acute renal failure requiring Mechanical circulatory support (IABP, VAD, ECMO, or CPS) temporary dialysis with the need for dialysis not present at hospital Multi-System Organ Failure (MSOF) = Multi-Organ Dysfunction discharge or 91 days if patient is still in hospital Syndrome (MODS) Renal failure - acute renal failure, Acute renal failure requiring Neurological deficit diagnosed in the operating room, persisting at temporary hemofiltration with the need for dialysis not present at discharge or 91 days if patient is still in hospital. hospital discharge or 91 days if patient is still in hospital Neurological deficit diagnosed in the operating room, not present Respiratory failure, requiring tracheostomy at discharge Seizure Neurological deficit that occurred after the operating room visit, Sepsis persisting at discharge Spinal cord injury, Neurological deficit persisting at discharge Neurological deficit that occurred after the operating room visit, Stroke: Ischemic not present at discharge Subdural Bleed Paralyzed diaphragm (possible phrenic nerve injury), requiring Systemic vein obstruction surgical plication Unplanned cardiac reoperation during the postoperative or Pericardial Effusion, requiring drainage postprocedural time period, exclusive of reoperation for bleeding Peripheral nerve injury persisting at discharge or 91 days if patient Vocal cord dysfunction (possible recurrent laryngeal nerve injury) is still in hospital Wound dehiscence-Median Sternotomy Peripheral nerve injury not present at discharge or 91 days if patient is still in hospital Wound infection-Mediastinitis Wound infection-Superficial wound infection

Did the patient have a non-cardiac Yes 2. operation within this admission? No If more than one operation within this admission, enter each Unknown operation with its associated date.

Date of operation DD/MM/YYYY Missing Reason: 2a. Clear Unknown

Specify non-cardiac operation Mediastinal Exploration (Bleeding) 2b. Pacemaker Placement Ligation of Thoracic Duct Diaphragm Plication Tracheostomy Mediastinal Drainage Wound Debridement/exploration Post-operative mechanical circulatory support: (IABP, ECMO, VAD, CPS Cardiopulmonary Support) Unplanned Non-cardiac Reoperation, other, specify

Gastrostomy tube placement Pericardial drainage tube/catheter Pleural drainage tube/catheter Mediastinal Drainage/Exploration for Blood or Fluid Mediastinal Drainage/Exploration for Infection

Specify post-operative ECMO (Extracorporeal Membrane Oxygenation) 2b.i mechanical circulatory support IABP (Intra-Aortic Balloon Pump) Durable VAD (Durable Ventricular Assist Device) Temporary VAD (Cardiopulmonary Support)

Did the patient have a catheter- Yes 3. based intervention within this No admission? Unknown If more than one intervention within this admission, enter each intervention with its associated date.

Date of Intervention DD/MM/YYYY Missing Reason: 3a. Clear Unknown

Specify Catheter-Based Aortic Arch: Balloon /Stent Placement 3b. Intervention Arrhythmia ablation Aortic Valve: Balloon Valvuloplasty Shunt closure Shunt Thrombolysis Arterial-Pulmonary (AP) collaterals: Occluding Device, placement Atrial Septal Defect: Occluding Device, placement Descending Aorta / Isthmus: Balloon /Stent Placement Drainage of Seroma Mitral Valve: Balloon Valvuloplasty Patent Ductus Arteriosus: Balloon/Stent placement Patent Ductus Arteriosus: Occluding Device, placement Pulmonary Veins: Balloon/Stent placement Pulmonary Valve: Balloon Valvuloplasty RVOT: Balloon/Stent placement Systemic Veins: Balloon/Stent placement Systemic to Pulmonary Stunt: Balloon/Stent placement Veno-venous collaterals: Occluding Device, placement Other, specify Did the patient have another Yes 4. cardiac surgery within this No admission? If yes, a New Surgery Form should be added.

Date of Patient Discharge DD/MM/YYYY Missing Reason: Clear 5. If patient died in hospital, date of death should be entered as the discharge date. Still in hospital

Status at Discharge or at 90 days Alive 6. post-op if still in hospital Dead If patient status is dead, complete death form.

© 2020 World Database for Pediatric and Congenital Heart Surgery Not Started Follow-Up Form Print this Form

Do you have any follow up Yes 1. information since the most recent No form (discharge/90 days or follow- up) was completed?

How was the follow up Phone 1a. information obtained? Clinic Hospital Relative Other, specify

Is the patient alive at one year Yes 1b. post Tier 1 Surgery? No All questions on this form are pertaining to events that Unknown occurred post discharge from the Tier 1 surgery listed above and prior to the date of follow-up. Any events that occurred prior to discharge should be reproted on the post-operative events form.

Has the ongoing care of the Yes 1c. patient been transferred to No another facility? Unknown

Date of Transfer ... MM/YYYY Missing Reason: 1d. Clear

Was the patient readmitted for a Yes 2. non-cardiac operation since No completion of the last Post Unknown Operative Events Form? If more than one operation within this admission, enter each operation with its associated date.

Date of Reoperation ... MM/YYYY Missing Reason: 2a. Clear Unknown

Specify non-cardiac reoperation Mediastinal Exploration (Bleeding) 2b. Pacemaker Placement Ligation of Thoracic Duct Diaphragm Plication Tracheostomy Mediastinal Drainage Wound Debridement/exploration Post-operative mechanical circulatory support: (IABP, ECMO, VAD, CPS Cardiopulmonary Support) Unplanned Non-cardiac Reoperation, other, specify Gastrostomy Tube Placement Pericardial Drainage Tube/Catheter Pleural Drainage Tube/Catheter Mediastinal Drainage/Exploration for Blood or Fluid Mediastinal Drainage/Exploration for Infection

Specify post-operative ECMO (Extracorporeal Membrane Oxygenation) 2b.i mechanical circulatory support IABP (Intra-Aortic Balloon Pump) Durable VAD (Durable Ventricular Assist Device) Temporary VAD (Cardiopulmonary Support)

Did the patient have a catheter- Yes 3. based intervention since the No completion of last Post-Operative Unknown Events Form? If more than one intervention within this admission, enter each intervention with its associated date.

Date of Intervention ... MM/YYYY Missing Reason: 3a. Clear Unknown

Catheter-Based Intervention Aortic Arch: Balloon /Stent Placement 3b. Aortic Valve: Balloon Valvuloplasty Arrhythmia ablation Arterial-Pulmonary (AP) collaterals: Occluding Device, placement Atrial Septal Defect: Occluding Device, placement Descending Aorta / Isthmus: Balloon /Stent Placement Drainage of Seroma Mitral Valve: Balloon Valvuloplasty Patent Ductus Arteriosus: Balloon/Stent placement Patent Ductus Arteriosus: Occluding Device, placement Pulmonary Veins: Balloon/Stent placement Pulmonary Valve: Balloon Valvuloplasty RVOT: Balloon/Stent placement Shunt closure Shunt Thrombolysis Systemic Veins: Balloon/Stent placement Systemic to Pulmonary Stunt: Balloon/Stent placement Veno-venous collaterals: Occluding Device, placement Other, specify

Readmission for any pediatric or Yes 4. congenital heart surgery since No completion of last Post-Operative Unknown Events Form? If yes, New Surgery Form, and Post-Operative Events Form should be completed. © 2020 World Database for Pediatric and Congenital Heart Surgery Not Started Tier 2 Surgery Discharge Form Print this Form

At the time of patient discharge (or at Yes 1. 90 days postop if patient is still in the No hospital), is patient alive?

Date of patient discharge DD/MM/YYYY Missing Reason: 1a. Clear Still in hospital 91 days post surgery

Date of patient death DD/MM/YYYY Missing Reason: 1a. Clear

© 2020 World Database for Pediatric and Congenital Heart Surgery

Not Started Death Form Print this Form

Date of Death DD/MM/YYYY 1. This form should be completed at the time of death if the patient died within one year +60 days of any Tier 1 surgery.

Primary Cause of Death 2. Enter only ONE primary cause of death. If unsure of the primary, check with your local surgeon.

Accident Rejection Acute or chronic cardiac failure Renal failure Anoxic event Respiratory failure Bleeding Rhythm disturbance Non-cardiac bleeding Suicide Surgical bleeding (intra op or post op) Surgical site infection Coronary artery event Other major infection Gastrointestinal complications Sepsis Liver failure Systemic embolism Malignancy Inoperable Defect Mechanical circulatory support failure Other, specify Neurologic event Pulmonary embolism

Autopsy Yes 3. No Unknown

Autopsy Findings Missing Reason: 3a. Clear Unknown

Special Circumstances Missing Reason: 4. Clear No special circumstances

Unknown

© 2020 World Database for Pediatric and Congenital Heart Surgery