1. Annual Spring Meeting April 26, 2016 7:00pmWelcomeM. Everitt 7:05pmSteering Committee UpdateM. Everitt 7:15pmDCC UpdateD. Naftel/ S. Lenderman 7:30pmWeb Based Data Entry UpdateD. Naftel/ S. Lenderman 7:40pmDatabase Committee UpdateM. Richmond 7:55pmMATE Project OverviewC. Almond 8:00pmBreak 8:15pmPedimacs ReportD. Rosenthal 8:25pmFoundation UpdateR. Gajarski 8:35pmScientific Committee UpdateD. Hsu 8:45pmScientific Committee Sponsored WorkshopD. Hsu 9:35pmLimited Data Set Request SOPM. Everitt 9:40pmNew Business 10:00pmAdjournM. Everitt

2. 2015-2016 Scientific Committee Members Daphne Hsu, MD Chair Elfi Pahl, MD Vice Chair/Secretary Yuk Law, MD Scientific-Steering Committee Liaison Simon Urschel, MD Co-Chair Scientific Proposal Committee Members At Large Linda Addonizio, MD Dan Bernstein, MD Ryan Butts, MD Charlie Canter, MD Matthew Fenton, MD Steve Kindel, MD Ken Knecht, MD Bob Morrow, MD Janet Scheel, MD Rocky Singh, MD, MS Simon Urschel, MD James Kirklin, MD Elizabeth Pruitt, MSPH

3. Submitted Manuscripts Status: April 2016 TopicPI/SRIStatus AMR (2013) Thrush Addressing Reviewer Comments Fontans by Era (2013) Simpson Canter Addressing Reviewer Comments Sirolimus (2013) Rossano Addressing Reviewer Comments LDR: MATE (2015) AlmondSubmitted to Circulation Cancer Recurrence (2015) BockSubmitted to JHLT

4. Manuscripts in Preparation Status: April 2016 TopicPI/SRIStatus VAD (2012) Dipchand Kirklin Conducting reanalysis PTLD (2014) West Feingold Dr. West to finalize manuscript LDS Surveillance Biopsies (2014) Zinn Canter Dr. Zinn to finalize manuscript Bacterial Infection (2015) Rostad Scheel Dr. Rostad to finalize manuscript Induction Therapy (2015) Castleberry Urschel Dr. Castleberry to finalize manuscript MCSD Graft Failure (2015) Simmonds Addonizio Dr. Simmonds to finalize manuscript Single Ventricle in MCSD (2015) Das Canter Dr. Das to finalize manuscript CO Etiology (2015) Pruitt Naftel Elizabeth Pruitt to finalize manuscript LDSR: Hemodynamics (2014) Chen Almond Received approval from Scientific Committee to submit for publication.

5. TopicPI/SRIStatus Fontan (2013) Almond Dr. Almond has received the additional data Berlin Heart (2015) Jeewa Fraser PHTS DCC working on analysis Donor Crossmatch (2015) Das Hsu PHTS DCC working on analysis (Submitting to AHA 2016) Diabetes Post-Transplant (2015) Sparks Morrow PHTS DCC working on analysis (Submitting to AHA 2016) Risk Factor (2015) Schumacher Canter PHTS DCC working on analysis Analyses in Progress Status: April 2016

6. Limited Data Sets Status: April 2016 TopicPI/SRIStatus LDR: HLAAlbersDr. Albers working on abstract

7. Project Overview

8. Publications December 2015 – April 2016 4 Publications

9. Recent Publications The Journal of Thoracic and Cardiovascular Surgery, 2016-01-01, Volume 151, Issue 1, Pages 167-175.e2

10. Recent Publications Journal of Heart and Lung Transplantation, 2016: March 35 (3): 301-305.

11. Recent Publications Journal of Heart and Lung Transplantation, 2016 Apr; 35 (4):457-65.

12. Recent Publications Journal of Heart Lung Transplant. 2016 Apr; 35 (4):540-542.

13. PHTS Presentations at ISHLT

15. ISHLT 2016 Oral Presentation Washington Ballroom 2: Thursday, April 28, 2016 at 11:15am Bacterial infections following pediatric heart transplantation: Epidemiology, risk factors, and outcomes Christina Rostad, MD 1, Karla Wehrheim, MD 2, Elizabeth Pruitt, MSPH 3, James K. Kirklin, MD 3, William Mahle, MD 1, Tim Hoffman, MD 4, Thomas L’Ecuyer, MD 5, Katie Berkowitz, R.N., M.S.N., C.P.N.P.-A.C 1 and Janet Scheel, MD 6 1 Children’s Healthcare of Atlanta, Atlanta, GA; 2 Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL; 3 University of Alabama at Birmingham, Birmingham, AL; 4 University of North Carolina, Chapel Hill, NC; 5 University of Virginia Medical Center, Charlottesville, VA; 6 Children’s National Medical Center, Washington, DC.

16. ISHLT 2016 Oral Presentation Washington Ballroom 2: Thursday, April 28, 2016 at 11:00am Cancer recurrence and mortality after pediatric heart transplantation for Anthracycline Cardiomyopathy Matthew Bock, MD 1, Elizabeth Pruitt, MSPH 2, James K. Kirklin, MD 2, Clare Twist, MD 3, Paolo Rusconi, MD 4, Gerard Boyle, MD 5, John Parent, MD 6, Elfi Pahl, MD 7, and Dan Bernstein, MD 3 1 Loma Linda University Medical Center, Loma Linda, CA; 2 University of Alabama at Birmingham, Birmingham, AL; 3 Lucile Packard Children’s Hospital at Stanford, Stanford, CA; 4 University of Miami, Jackson Memorial Hospital, Miami, FL; 5 Cleveland Clinic Foundation, Cleveland, OH; 6 Riley Hospital for Children, Indianapolis, IN; 7 Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL.

17. ISHLT 2016 Mini-Oral Presentation Delaware Suite: Thursday, April 28, at 6:20pm Impact of Induction Therapy Type in High and Low Risk Pediatric Patients after Heart Transplant Chesney Castleberry, MD 1, Elizabeth Pruitt, MSPH 2, James K. Kirklin, MD 2, Rebecca Ameduri, MD 3, Ken Schowengerdt, MD 4, Erik Edens, MD 5, Nancy Hagin, RN, BSN 1, and Simon Urschel, MD 6. 1 St. Luis Children’s Hospital, St. Louis, MO; 3 University of Alabama at Birmingham, Birmingham, AL, 4 University of Minnesota, Amplatz Children’s Hospital, Minneapolis, MN; 5 Cardinal Glennon Children’s Medical Center, St. Louis, MO; 6 University of Iowa Children’s Hospital, Iowa City, IA; 2 University of Alberta, Edmonton, AB, Canada

18. ISHLT 2016 Oral Presentation Virginia Suite: Friday, April 29, 2016 at 2:30pm Mechanical Support for Primary Graft Failure and Early Rejection in Pediatric Heart Transplantation Jacob Simmonds, MD 1, Dipanker Gupta, MD 2, Elizabeth Pruitt, MSPH 3, James K. Kirklin, MD 3, Steve Zangwill, MD 4, Debra Dodd, MD 5, Sarah Bohannan 1 and Linda Addonizio, MD 6 1 Great Ormond Street Hospital for Children, London, UK; 2 University of Florida, Shands Hospital, Gainesville, FL; 3 University of Alabama at Birmingham, Birmingham, AL; 4 Phoenix Children’s Hospital, Phoenix AZ; 5 Monroe Carell Jr. Children’s Hospital at Vanderbilt, Nashville, TN; 6 Columbia University-Morgan Stanley Children’s Hospital of New York Presbyterian, New York, NY.

19. ISHLT 2016 Oral Presentation Maryland Suite: Thursday, April 28, 2016 at 4:45pm Mechanical Circulatory Support as a bridge to transplantation in children with Single Ventricle Physiology Bibhuti Das, MD 1, Elizabeth Pruitt, MSPH 2, James K. Kirklin, MD 2, Kimberly Lin, MD 3, Borah Hong, MD 4, Maryanne Chrisant, MD 5, Susan Daneman, RN, BSN 1 and Charles Canter, MD 6, 1 University of Texas, Children’s Medical Center, Dallas TX; 2 University of Alabama at Birmingham, Birmingham, AL, 3 Children’s Hospital of Philadelphia, Philadelphia, PA; 4 Seattle Children’s, Seattle, WA; 5 Joe DiMaggio Children’s Hospital, Hollywood, FL; 6 St. Louis Children’s Hospital, St. Louis, MO.

20. ISHLT 2016 Oral Presentation Virginia Suite: Friday, April 29, 2016 at 3:00pm Development and Validation of a Major Adverse Transplant Event (MATE) Score to Predict Graft Loss after Pediatric Heart Transplantation Christopher Almond 1, J. W. Rossano 2, H. Hoen 1, C. Castleberry 3, S. Auerbach 4, L. Yang 1, A. K. Lal 5, M. D. Everitt 4, E. Pahl 6, M. Fenton 7, S. A. Hollander 1, D. B. McElhinney 1, D. N. Rosenthal 1, K. P. Daly 8, and M. Desai 1. 1 Stanford University, Palo Alto, CA, 2 Children's Hospital of Philadelphia, Philadelphia, PA, 3 Washington University/St. Louis, St. Louis, MO, 4 Denver Children's Hospital, Denver, CO, 5 Primary Children's Hospital, Salt Lake City, UT, 6 Lurie Children's Hospital, Chicago, IL, 7 Great Ormond Street Children's Hospital, London, United Kingdom, 8 Boston Children's Hospital, Boston, MA

21. ISHLT 2016 Poster Presentation Exhibit Hall B & C: Friday, April 29, 2016 at 6:00pm - 7:00pm Impact of Routine Surveillance Biopsy Intensity on the Diagnosis of Moderate to Severe Cellular Rejection and Survival After Pediatric Heart Transplantation Matthew Zinn 1, K. E. Simpson 2, M. J. Wallendorf 3, A. D. Osborne 4, J. K. Kirklin 5, and C. E. Canter 2. 1 Pediatric Cardiology, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, PA, 2 Pediatric Cardiology, St. Louis Children's Hospital, Washington University in St. Louis, St. Louis, MO, 3 Biostatistics, Washington University School of Medicine, St. Louis, MO, 4 Washington University School of Medicine, St. Louis, MO, 5 Cardiothoracic Surgery, University of Alabama at Birmingham, Birmingham, AL,

22. ISHLT 2016 Poster Presentation Exhibit Hall B & C: Friday, April 29, 2016 at 6:00pm - 7:00pm The Impact of Age on the Incidence and Prevalence of Moderate to Severe Cellular Rejection Detected by Routine Surveillance Biopsy in Pediatric Heart Transplantation Matthew Zinn 1, K. E. Simpson 2, M. J. Wallendorf 3, A. D. Osborne 4, J. K. Kirklin 5, and C. E. Canter 2. 1 Pediatric Cardiology, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, PA, 2 Pediatric Cardiology, St. Louis Children's Hospital, Washington University in St. Louis, St. Louis, MO, 3 Biostatistics, Washington University School of Medicine, St. Louis, MO, 4 Washington University School of Medicine, St. Louis, MO, 5 Cardiothoracic Surgery, University of Alabama at Birmingham, Birmingham, AL,

23. ISHLT 2016 Poster Presentation Exhibit Hall B & C: Friday, April 29, 2016 at 6:00pm - 7:00pm Hemodynamic Findings Associated with End-Organ Dysfunction in Children with End-Stage Heart Failure Sharon Chen, D. B. McElhinney, J. C. Dykes, D. N. Rosenthal, S. A. Hollander, K. Maeda, K. Jensen, V. V. Yarlagadda, M. A. Ford, J. F. Price, and C. S. Almond. Stanford University, Palo Alto, CA

24. ISHLT 2016 Poster Presentation Exhibit Hall B & C: Friday, April 29, 2016 at 6:00pm - 7:00pm Relationship between Hemodynamic Variables and NYHA/Ross Functional Capacity in Children with Advanced Heart Failure John C. Dykes, S. Chen, A. Lin, D. N. Rosenthal, K. Maeda, D. B. McElhinney, and C. S. Almond. Pediatrics, Stanford University, Palo Alto, CA,

25. Spring Proposal Review Twice yearly proposal submissions timed to the AHA and ISHLT submission dates RFP –Pedimacs/PHTS collaboration –> 18 year old survivors 16 proposals reviewed by scientific proposal committee Selection being finalized, authors assigned

26. Spring Proposal Review Lead author of the accepted proposal will chair the writing committee A scientific committee member will be assigned as the senior mentor to based on specific expertise. Lead author can nominate one coordinator to the writing group. If lead is a trainee, the local senior mentor will join the writing group If proposals are combined, the lead applicant of the lower ranked proposal will be offered secondary leadership The PHTS DCC will choose 2 members of the writing group Other PHTS centers (usually 2-3) will be asked to nominate a writing group member based on their previous inclusion on manuscripts –# authorships/years of memberships in the PHTS –Centers with the lowest number will be selected –Centers who have contributed data for less than 3 years to PHTS will not be eligible Writing Group Membership Selection

27. Spring Proposal Review The project lead and PHTS scientific mentor will arrange a discussion call regarding study design, methodology and core data analysis with the PHTS statistical and support staff prior to a first writing group call. Deadlines for abstract submission and preferred journal for submission can also be discussed / established at that time. The first and senior author of the project are strongly encouraged to travel to the stats center in Birmingham, Alabama for a one day data analysis session with a concluding phone conference of the entire writing group. The goal of this meeting is to complete a large part of the analysis and optimize the analytic approach and draft the abstract for presentation of the project. Abstract presentations are reviewed by the scientific committee 2 weeks prior to presentation Manuscripts are reviewed by the scientific committee prior to submission Proposal Development