Annual Fall Meeting November 13, 2016 6:30pm Welcome J. Kirklin/M. Everitt 6:40pm Steering Committee Report M. Everitt 6:50pm DCC Update J. Kirklin/D. Naftel 7:05pm Web Based Data Entry D. Naftel 7:20pm Database Committee Report M. Richmond 7:35pm Foundation Update C. Collum/B. Wilk/R. Gajarski 7:50pm Risk Factor Model K. Schumacher 8:05pm Heart Failure Simulation B. Feingold 8:10pm iPHFR R. Gajarski 8:15pm Break 8:30pm Pedimacs Report B. Blume 8:40pm Scientific Committee Report D. Hsu 8:50pm Scientific Committee Sponsored Workshops 9:35pm New Business 9:45pm Adjourn

Data entry completion

Published Manuscripts Outcomes of children implanted with ventricular assist devices in the United States: First analysis of the Pediatric Interagency Registry for Mechanical Circulatory Support (Pedimacs) Blume, Elizabeth D. et al. The Journal of Heart and Lung Transplantation   Adverse Events in Children Implanted with Ventricular Assist Devices in the US: Data from the Pediatric Interagency Registry for Mechanical Circulatory Support (Pedimacs) Rosenthal, D.N. et al. The Journal of Heart and Lung Transplantation Outcomes of pediatric patients supported with continuous-flow ventricular assist devices: A report from the Pediatric Interagency Registry for Mechanical Circulatory Support (Pedimacs) Rossano, Joseph W. et al. The Journal of Heart and Lung Transplantation

Projects in process Infectious Complications of Ventricular Assist Device use in Children in the US: Data from the Pediatric Interagency Registry for Mechanical Circulatory Support S. Auerbach Research Status: ISHLT 2015. Finalizing manuscript Temporary Circulatory Support in Children in the US: Data from the Pediatric Interagency Registry for Mechanical Circulatory Support A. Lorts Research Status: ISHLT 2015 manuscript in draft Utilization and Outcomes of Ventricular Assist Device Support in Adult Congenital Heart Disease: An analysis of the Intermacs C. Vanderpluym Research Status: ISHLT 2015 Manuscript submitted to JHLT Pedimacs and PHIS databases to evaluate: Resource Utilization in Pediatric Patients Supported with Ventricular Assist Devices J. Rossano Research Status: Linkage in process at CHOP  Changes in Renal Function Following Left Ventricular Assist Device Placement in Pediatric Patients J. Friedland-Little Research Status: Accepted AHA 2016   Outcomes of infections in children and young adults with ventricular assist devices S. Chen Research Status: Submitted ISHLT PHTS-Pedimacs linkage: Sutcliffe, Research Status: Submitted ISHLT

2017 project directions Single ventricle/ CHD Neuro AE PHIS $$ Rehospitalizations/discharge Quality of life

28 institutions have participated in writing groups Lurie Children’s Hospital of Chicago Barnes-Jewish Hospital/St.Louis Children's Children's Healthcare of Atlanta Children's Hospital Boston Children's Hospital of Colorado Children's Hospital of Wisconsin Children's Medical Center, Dallas Texas Cincinnati Children's Hospital Medical Center Columbia Presbyterian Children's Hospital of NY Duke University NHLBI Seattle Children's Hospital Shands at the University of Florida Stanford University Medical Center Stollery Children's Hospital, Canada Texas Children's Hospital The Childrens Hospital, Denver The Children's Hospital of Philadelphia UCLA University of Alabama at Birmingham University of Colorado Hospital University of Michigan University of Nebraska Children's Hospital University of Pittsburgh Washington University School of Medicine Lucile Packard Children's Hospital Medical University of South Carolina Methodist Hospital Indiana Nemours/A.I. duPont Hospital for Children 58 individual investigators

How to Get Pedimacs Reports and Data Pedimacs reports are easily accessible online as a part of the Intermacs statistical reporting Public Statistical Report – http://intermacs.org/reports/public-statistical-report Biannually, an updated Pedimacs Statistical Report is released including overall cohort patient and implant characteristics and outcomes such as survival estimates and competing outcomes Quality Assurance Site Report – http://intermacs.org/reports/quarterly-site-reports Site administrators can download a site specific comparison report comparing patient and implant characteristics and outcomes at their site with the overall Pedimacs cohort on a biannual basis Data Quality Site Report – http://intermacs.org/reports/quarterly-site-reports A snapshot of key data elements are provided to Site Administrators twice a year and are a part of the Pedimacs auditing process Coming Soon Research SAS Datasets – http://intermacs.org/reports/research-sas-datasets Each quarter the many forms collected in Pedimacs are checked and combined into analytical datasets suitable for research and analysis Instantaneous Downloadable Excel Spreadsheets, Web Based Cohort Comparisons, and User Specified Outcome Analytics Who is my site administrator?

Participation Quality of Life Committee Coordinator Council Adjudication committee/ Adverse Events Writing groups International participation Education Committee

Please join us for the Intermacs 11th Annual Meeting March 3-4, 2017 Westin Peachtree Plaza 210 Peachtree Street NW Atlanta, GA 30303