Session III: Linking Intermacs to the World: The Power of Collaboration Intermacs and the ISHLT Registry for Mechanically Assisted Circulatory Support (IMACS) Rongbing Xie, MPH IMACS Statistician

 IMACS Overview  Collaboration with INTERMACS  IMACS Research  Collaborative Benefits/Challenges Outline Outline

 The International Society for Heart and Lung Transplantation Registry for Mechanically Assisted Circulatory Support (IMACS®)  International registry  Enrolls and follows durable MCSD patients  Global collaboration  Research IMACS Overview IMACS Overview

IMACS Steering Committee IMACS Steering Committee U.S.A. James K. Kirklin, MD Craig Collum, MPH Rongbing Xie, MPH Ryan Cantor, MSPH Josef Stehlik, MD, MPH Robert L. Kormos, MD Francisco Arabia, MD Daniel J. Goldstein, MD Jennifer Cowger, MD Stephen Schueler, MD, PhD, FRCS Ulrich P. Jorde, MD Amanda W. Rowe Mandeep R. Mehra, MD, MBBS, FACC, FACP Australia Chris J. Merry, MD Canada Anne I. Dipchand, MD Singapore Cumara C. Sivathasan, MBBS, FRCS U.K. Stephen Schueler, MD, PhD, FRCS Germany Theo De By, BA, MBA Ireland Margaret M. Hannan, MD Sweden Lars H. Lund, MD, PhD Japan Takeshi Nakatani, MD, PhD

IMACS Organizational Chart IMACS Organizational Chart IMACS Individual Hospitals IntermacsJ-macsEuromacsUK

IMACS Enrollment Update IMACS Enrollment Update as of 3/2/16 Total Number of Individual Hospitals Enrolled 20 Total Number of Collectives Enrolled 4 Total number of Adult Patients Enrolled (Individual and Collective combined) 9650 Total Number of Countries Represented in the IMACS® Registry 31

INTERMACS’ Contributions to IMACS  Patient volume (76% IMACS patients)  Longer observational periods  Years of experience with data collection, management, reporting, and research  Recognition, validity, and assurance

INTERMACS’ Engagement in IMACS  Administrative  Serve on executive committee  Participate at ISHLT annual meeting  Assist with hospital recruitment  Data Collection  Data agreement, sharing and linking  Research  Research committee  Annual report  Publications

IMACS’ Publications The dawn of the ISHLT Mechanically Assisted Circulatory Support (IMACS ®) Registry: Fulfilling our mission The Journal of Heart and Lung Transplantation Feb; 31(2): Percutaneous drive-line infections into the future with the International Mechanically Assisted Circulatory Support (IMACS®) Registry The Journal of Heart and Lung Transplantation Nov; 31 (11): First Annual IMACS Report: A Global ISHLT Registry for Mechanical Circulatory Support The Journal of Heart and Lung Transplantation. Article In Press

Annual Report

Highlights from IMACS’ First Annual Report

Risk Factors for IMACS Adult Patients’ Survival  Early Phase Risk Factors:  Older Age  Female  INTERMACS Profile 1  Non-Continuous Flow Devices  Surgical complexities (History of CABG, Concomitant surgery)  Dialysis at Implant  RVAD in the same operation  Constant Phase Risk Factors:  Prior Stroke  Severe RVEF impairment

Collaborative Benefits/Challenges  Benefits  Hospitals and collectives – quality assurance  Physicians – practice standards  Patients – quality of care  Challenges  Time-zones  Data management timelines  Recruitment  Regulatory  Language  Definitions and measurements

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