Agenda 8:00pm Welcome Marc Richmond / Elfi Pahl 8:10pm Steering Committee Report Marc Richmond 8:20pm DCC Update James Kirklin / Nick Timkovich 8:40pm Database Committee Report Jennifer Conway 8:55pm Quality of Life Update Karen Uzark 9:00pm Foundation Update Craig Collum 9:10pm Scientific Committee Report Elfi Pahl 9:20pm Enduring Hearts Bob Boucek 9:25pm New Foundation Officers Melanie Everitt 9:30pm Adjourn

2018 Scientific Committee Members Anne Dipchand, MD Chair Elfi Pahl, MD Vice Chair -Scientific-Steering Committee Liaison Members At Large Scott Auerbach, MD Steve Webber, MD Bob Shaddy, MD Kevin Daly, MD Seth Hollander, MD Ashwin Lal, MD Jacque Lamour, MD James Kirklin, MD Katie Simpson, MD David Sutcliffe, MD Wally Carlo, MD 4/11/2019

Proposed Revision to Scientific Committee Member Rotation Each year 3-4 new members will rotate on the Scientific Committee from the rotating list and 5 will rotate off Terms will each be two years The Steering Committee will appoint 1-2 senior investigators each term The Steering Committee will appoint the Chair and Steering/Scientific Committee liaison A list of interested members will be maintained by the DCC and 3-4 members will be invited at random for each term Interested members can add their name to the list at anytime by emailing Susanna Lenderman.

Submitted Manuscripts (November 2017) Topic First / Senior Author Journal HC Rejection (Limited Data Set) Jake Kleinmahon Melanie Everitt JHLT HLA Erin Albers Yuk Law Diabetes Joshua Sparks Bob Morrow Pediatric Transplantation Less Than 10 Kilograms Jennifer Conway Elfriede Pahl Circulation Heart Failure PTLD Shawn West Brian Feingold Clinical Transplantation 4/11/2019

Manuscripts in Preparation Topic First / Senior Author Status CAV Practice Variation Elfriede Pahl Clifford Chin Finalizing manuscript Hemodynamic Surveillance Kate Arbon Steven Kindel DCC updating analyses Pulmonary Atresia/Intact Septum Anna Joong Rob Gajarski Renal Dysfunction (Joint PHTS/Pedimacs) Seth Hollander Jennifer Conway Manuscript in progress Rejection Working Group Justin Godown Daphne Hsu 4/11/2019

Manuscripts in Preparation Topic First / Senior Author Status VAD Infection Scott Auerbach James Kirklin Finalizing manuscript Single Ventricle MCSD Bibhuti Das Immunosuppression Working Group Marc Richmond Robert Gajarski Drafting manuscript MCSD Graft Failure Jacob Simmonds Linda Addonizio Heterotaxy Asma Khan Melanie Everitt Working on manuscript draft 4/11/2019

Manuscripts in Preparation Topic First / Senior Author Status Fontan (Limited Data Set) John Dykes Chris Almond Updating analyses PVR Stephanie Handler Steven Kindel Drafting manuscript 4/11/2019

Ongoing Projects Topic First / Senior Author Status Barth Syndrome (Limited Data Set) Brian Feingold Extra data collection complete, beginning analyses for abstract 4/11/2019

Abstracts submitted to ISHLT 2019 Topic First / Senior Author Liver Dysfunction Shahnawaz Amdani Kevin Daly ABO Incompatible Simon Urschel Wally Carlo ReTransplantation Mari Carmen Anne Dipchand 4/11/2019

Presentations at AHA 4/11/2019

AHA 2018 Presentations Educational and Learning Morbidity in Pediatric Heart Transplant Recipients: A Pediatric Heart Transplant Society Study – Poster Presentation Micah S Brosbe, Lydia Wright, Elizabeth Pruitt, William J Dreyer, Sonya Kirmani, Margaret Knight, Stephanie Nakano, Steven J Kindel, Thomas D Ryan, James K Kirklin, Shriprasad R Deshpande When: Saturday, November 10, 2018 (11:30-12:45) Session: Congenital Heart Disease Outcomes Location: Science and Technology Hall, Zone 3 4/11/2019

Publications: November 2017 – November 2018 4/11/2019

Recent Publications Pediatr Transplant 2018 Feb, 22(1) 4/11/2019

Recent Publications J Heart Lung Transplant 2018 Apr, 37 (4) 441-450 4/11/2019

Recent Publications J Heart Lung Transplant 2018 Apr, 37(4) 458-466 4/11/2019

Recent Publications J Heart Lung Transplant 2018 June, 37 (6) 715-722 4/11/2019

Recent Publications American College of Cardiology 2018 July, 72 (4) 402-415 4/11/2019

Recent Publications Pediatr Transplant 2018 May, 22(3). 4/11/2019

Recent Publications Just Accepted at JHLT Long-term Outcomes After Transplantation Following Support with a Pulsatile Pediatric Ventricular Assist Device Aamir Jeewa, Michiaki Imamura, Charles Canter, Robert A Niebler, MD, Christina VanderPluym, David Rosenthal, James K. Kirklin, Ryan S. Cantor, Margaret Tresler, Michael McMullan, Victor Morell, Mark Turrentine, Rebecca Ameduri, Khanh Nguyen, Kirk Kanter, Jennifer Conway, Robert Gajarski, Charles D. Fraser Jr. 4/11/2019