Healthcare databases are key to advancing our knowledge of pathologies and their treatment. With the development of new technologies, clinical registries have been built and maintained to understand, monitor, and improve care worldwide. In the field of durable mechanical circulatory support, registries such as the International Society for Heart and Lung Transplantation Registry (ISHLT) for Mechanical Circulatory Support (IMACS) and the Interagency Registry for Mechanically Assisted Circulatory Support (Intermacs) database have been developed with great success. Both registries were established to advance the understanding and knowledge about mechanical circulatory support to improve outcomes and the quality of life for individuals with advanced heart failure. By providing “real-world” data, registries provide unique information complementary to data generated from clinical trials and fill an important clinical need to enable analyses from large sets of observational data. The roles of registries have been evolving from being purely descriptive to promoting standardization of research and providing a benchmarking tool that allows quality improvement initiatives. Overall, registries contribute to writing history in the MCS field and allow clinicians, scientists, researchers, and stakeholders to appreciate the 20 years of technological progress, management, and outcomes. Intermacs, now administered by the Society of Thoracic Surgeons, has become the cornerstone for MCS longitudinal study in the United States, providing the field with real-world evidence and standardized adverse event definitions. This successful registry endeavor has led to similar durable mechanical circulatory support device registry endeavors worldwide.

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Mechanical Circulatory Support Device Registries: Intermacs and IMACS

  • Pierre Emmanuel Noly,
  • Francis D. Pagani

摘要

Healthcare databases are key to advancing our knowledge of pathologies and their treatment. With the development of new technologies, clinical registries have been built and maintained to understand, monitor, and improve care worldwide. In the field of durable mechanical circulatory support, registries such as the International Society for Heart and Lung Transplantation Registry (ISHLT) for Mechanical Circulatory Support (IMACS) and the Interagency Registry for Mechanically Assisted Circulatory Support (Intermacs) database have been developed with great success. Both registries were established to advance the understanding and knowledge about mechanical circulatory support to improve outcomes and the quality of life for individuals with advanced heart failure. By providing “real-world” data, registries provide unique information complementary to data generated from clinical trials and fill an important clinical need to enable analyses from large sets of observational data. The roles of registries have been evolving from being purely descriptive to promoting standardization of research and providing a benchmarking tool that allows quality improvement initiatives. Overall, registries contribute to writing history in the MCS field and allow clinicians, scientists, researchers, and stakeholders to appreciate the 20 years of technological progress, management, and outcomes. Intermacs, now administered by the Society of Thoracic Surgeons, has become the cornerstone for MCS longitudinal study in the United States, providing the field with real-world evidence and standardized adverse event definitions. This successful registry endeavor has led to similar durable mechanical circulatory support device registry endeavors worldwide.