Annual Spring Meeting April 26, :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

PHTS Leadership Scientific Committee Steering CommitteeDatabase Committee Foundation Board Member Past President

PHTS Purpose (Est. 1993) The purposes of the group are to establish and maintain an international, prospective, event driven database for heart transplantation, to use the database to encourage and stimulate basic and clinical research in the field of pediatric heart transplantation and to promote new therapeutic strategies.

General Report of the DCC Hospital Growth Enrollment History of Current PHTS Hospitals

PHTS Listings and Transplants 20+ years of data and form changes/additions January 1, 1993 – April 1, 2016 Listings: 7,507Transplants: 5,530

Visits to UAB Leadership Visit January , 2016 Dr. Daphne Hsu from The Children’s Hospital at Montefiore & Dr. Melanie Everitt from Children’s Hospital Colorado Heart Institute visited UAB for the annual PHTS Leadership Meeting.

Visits to UAB Risk Factor Model February 19, 2016 Dr. Charles Canter from St. Louis Children’s Hospital & Dr. Kurt Schumacher from University of Michigan, CS Mott Children’s Hospital visited to discuss the Risk Factor Model project.

Visits to UAB Diabetes Post- Transplant March 22, 2016 Dr. Joshua Sparks from Kosair Children’s Hospital & Dr. Robert Morrow from Children’s Medical Center Research Institute at UT Southwestern visited to discuss the Diabetes Post-Transplant project which will be submitted to AHA 2016.

Visits to UAB Single Ventricle & Donor Crossmatch March 28, 2016 Dr. Bibhuti Das from Children’s Medical Center Research Institute at UT Southwestern visited to discuss the Single Ventricle and Donor Crossmatch projects.

PHTS Booth at ISHLT

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Impact on Transplant Community

Current Forms and Manual

Inclusion/Exclusion Criteria Patients listed for heart/lung transplant No informed consent 18 years of age at time of listing of older Patient is being transplanted at an institution in which they will not receive any follow-up care after surgery Previous transplant at another center Previous transplant at your center prior to your center joining PHTS Ineligible Patients

Inclusion/Exclusion Criteria Patients listed for heart/lung transplant No informed consent 18 years of age at time of listing of older Patient is being transplanted at an institution in which they will not receive any follow-up care after surgery Previous transplant at another center Previous transplant at your center prior to your center joining PHTS Ineligible Patients Removed from Exclusion Criteria *Effective August 31, 2015

Long Term Follow-Up PHTS currently has no policy requiring follow-up to cease at a certain age. Age restrictions on follow-up are determined by the local IRB Currently there is a variety of protocols ranging from follow-up stopping at ages 18, 21, 22 to patients being followed long term into adulthood. 18 years of age

Patient Timeline Listed Transplanted Rejection Infection Transfer Transfer Issues PHTS has no process to track transferred patients.

Patient Timeline Listed Transplanted Rejection Infection Transfer Transfer Issues Listed Transplanted Rejection Infection Transfer Rejection Infection Died PHTS has no process to track transferred patients.

Patient Timeline Listed Transplanted Rejection Infection Transfer Transfer Issues Listed Transplanted Rejection Infection Transfer Rejection Infection DiedListed Transplanted Rejection Infection Transfer Rejection Infection Transfers Rejection back PHTS has no process to track transferred patients.

Patient Timeline Listed Transplanted Rejection Infection Transfer Transfer Issues Listed Transplanted Rejection Infection Transfer Rejection Infection DiedListed Transplanted Rejection Infection Transfer Rejection Infection Transfers Rejection back Patients who die don’t come back PHTS has no process to track transferred patients. Events not recorded