International Registry for Mechanically Assisted Circulatory Support (IMACS)
IMACS Registry Steering Committee
The IMACS Registry Steering Committee is responsible for the oversight of the registry's operation and monitoring its ongoing progress.
The International Society for Heart and Lung Transplantation Registry for Mechanically Assisted Circulatory Support (IMACS) is an international registry intended to enroll and follow patients who receive durable mechanically assisted circulatory support devices (MCSD) in all countries and hospitals that wish to participate. Durable devices are defined as those devices that are capable of allowing patient discharge with the device in place. Devices are defined on a country by country basis. The registry will record pre-implant patient information, device information and will track the major post implant clinical events.
Data Coordinating Center
The Data Coordinating Center (DCC) for the IMACS Registry is Kirklin Solutions. Kirklin Solutions hosts the database and manages the collection and analysis of the data. Questions about the IMACS Registry and the data submission process may be directed to info@kirso-admin.net.
Registry Resources
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IMACS Standard Operating Procedure
The purpose of this document is to describe the steps of research projects, and the expectations that the process to be fully collaborative and to result in a publication.
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IMACS Data Access Request Form
Also referred to as Exhibit A in the IMACS Standard Operating Procedure, an IMACS Data Access Request Form must be submitted for all proposals requiring the use or analysis of IMACS Registry data.
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IMACS De-Identified Data Set Data Use Agreement (DUA)
Also referred to as Exhibit C in the IMACS Standard Operating Procedure, a signed Data Use Agreement (DUA) is required in order for the IMACS Registry to provide the deidentified dataset derived from the IMACS Registry.
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IMACS Proposal Timeline & Tasks
Also referred to as Exhibit B in the IMACS Standard Operating Procedure, this document includes the timelines and tasks for DCC analysis and De-Identified Database analysis.
Registry News
ISHLT Relaunches Global IMACS Registry to Advance MCS Therapy and Patient Outcomes
Following
a five-year hiatus, the world’s only registry of patients with durable mechanical circulatory support (MCS) devices is re-launching and will begin collecting data from institutions around the globe in early 2025.
The International Registry for Mechanically Assisted Circulatory Support (IMACS) registry is operated by the International Society for Health and Lung Transplantation (ISHLT), a global multidisciplinary professional organization dedicated to improving the care of patients with advanced heart and lung disease.
Mechanical circulatory support (MCS) devices are temporarily or permanently implanted in patients with advanced heart failure to keep the heart pumping enough blood. Approximately 4,000 MCS devices are implanted worldwide every year.
The IMACS registry will resume capturing worldwide data related to the outcomes of patients implanted with durable MCS devices designed to last 30 or more days, including ventricular assist devices and total artificial hearts. Most of the data for the registry is contributed by national and continental durable MCS registries worldwide, which in turn receive the data directly from participating healthcare institutions in their countries. All patient data, including device data and post-implant clinical events, is de-identified and compliant with relevant GDPR and privacy regulations.
“There’s
a lot of excitement about the future of MCS devices because transplantation relies on organs, which are very difficult to acquire, and that's not likely to change,” said Daniel Goldstein, MD, Chair of the IMACS Registry and
Professor and Vice Chair of the Department of Cardiothoracic Surgery at the Montefiore Health System in New York. “The scalable impact of MCS devices offers the potential to serve many more heart failure patients, adding years to their lives
and life to their years.”
The IMACS registry operated from 2012 to 2019 but was paused to update data privacy compliance processes with registry partners. The re-launched registry will contain data from collectives and countries worldwide, including North America, South America, Europe, the Middle East, and the Asia-Pacific region.
As part of the IMACS relaunch, ISHLT and its Foundation will fund research grants to advance outcomes, standards, and best practices in MCS therapy.
The registry will also provide participating collectives with statistical summaries of their enrolled patients for benchmarking against other national and regional data. The first annual report of the IMACS registry to feature the new data will be presented at the ISHLT Annual Meeting in April 2025.
“The ultimate goal of IMACS is to discover what countries can learn from each other and to be able to make regional comparisons in terms of demographics and outcomes and how programs are operationalized,” Dr. Goldstein said.
“Transplantation is not for everybody, and not everyone will be able to get a transplant,” he said. “If we can develop MCS technology that's more economically viable and that produces good quality and quantity of life, that's a win-win for everybody.”
To learn more about the registry and what’s to come, watch this video from IMACS Registry Steering Committee Chair, Daniel Goldstein, MD.
Questions?
Contact Olivia Penninger at +1-312-224-1253 or send an email to olivia.penninger@ishlt.org.
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