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. Save the Date An exchange of worldwide scientific and clinical expertise Local, national, and international speakers Didactic lectures and small group workshops for all members of the Transplant Team A unique opportunity to focus on Pediatric Heart Transplantation More detailed information available online: http://www.seattlechildrens.org/healthcare -professionals/education/cme/calendar Pediatric Heart Transplant Summit 2017

3. International Pediatric Heart Failure Registry iPHFR iPHFR 2015

4. Why a Registry? Following the completion of the Pediatric Heart Failure Guidelines, it was recognized that to move the Pediatric Heart Failure field forward an international registry was required. iPHFR 2015

5. Objective To collect and analyze clinically relevant data on pediatric heart failure patients to better understand the natural history as well as response to current and future disease treatment regimes. iPHFR 2015

6. iPHFR Patient Destinations iPHFR Recovery Stable HF MCS (Pedimacs, iMacs) Listing (PHTS) Tx (ISHLT, PHTS)

7. Current Status  Inaugural year for the iPHFR  Data elements finalized and data fields programmed  January 4, 2016: Database launched and center enrollment commenced

8. Centers Enrolled / Activated (as of April 20, 2016) COUNTRY Hospital Code HospitalSite PI CANADA 01CN11 University of Alberta Hospitals/Walter C. Mackenzie Health Sciences Edmonton, AB T6G 2B7 Jennifer Conway UNITED STATES INIM Riley Hospital - Indiana University Health Indianapolis, IN John Parent MOCM Children's Mercy Hospital Kansas City, MO Aliessa Barnes NYFL Strong Memorial Hospital, University of Rochester School of Medicine Rochester, NY Carol Wittlieb- Weber OHCH Children's Hospital Columbus, OH Robert Gajarski

9. IRB Submitted (that we know of…) CountryHospital Name Canada Hospital for Sick Children (PI: Dipchand) Brazil Heart Centre (Sao Paulo) (PI: Azeka) US Columbia (NY) (PI: Zuckerman) US Colorado Children’s (Denver) (PI: Auerbach)

10. IRB in progress (that we know of…) CountryHospital Name IRB Status US Stanford (California) (PI: Almond) Ready to submit US Lurie Children’s (Chicago) (PI: Pahl) Research review committee US Boston Children’s (Boston) (PI: Vanderplym) Internal review; IRB in progress US Seattle Children’s (Seattle) (PI: Law) Ready to submit US Cincinatti Children’s (Cincinatti) (PI: Lorts) In progress US Rady Children’s (San Diego) (PI: xx) In progress US MUSC (South Carolina) (PI: Butts) In progress

11. Centers that have expressed interest (that we know of…) CountryHospital Name Singapore KK Children’ (Singapore) (PI: Chen) US Arkansas Children’s (Arkansas) (PI: xx) US Children’s National (Washington) (PI: xx) US Kosair (Louisville, Kentucky) (PI: xx) US Primary Children’s (Utah) (PI: xx) US Nemours (xx) (PI: Giddings)

12. Steering Committee  Anne Dipchand (Chair)  Richard Kirk  Chris Almond  Christina VanderPluym  Angela Lorts  Yuk Law  Elfi Pahl  Estela Azeka  Robert Gajarski  Scott Auerbach  Warren Zuckerman  Leah Edwards (UNOS) iPHFR 2015

13. iPHFR Invitation

14. Institutional enrollment information available at... www.ishlt.org/registries iPHFR 2015

15. Questions? anne.dipchand@sickkids.ca iPHFR 2015