Executive Committee

The Executive Committee (EC) provides direction, oversight and approval to the registry’s design, architecture, protocols and procedures, data collection forms and other functional components. As the driving force behind the entire registry, the EC reviews and formalizes all major decisions and initiatives of the registry.  This group meets each week.

Pedimacs

The pediatric committee, Pedimacs, evaluates special issues in the pediatric population receiving MCSD therapy, differences in devices available, and the particular pediatric population for whom this therapy may be most effective.  They provide expertise on the unique aspects of infants, children, and teenagers receiving MCSD therapy. Pedimacs is instrumental in the scientific analysis of pediatric data, and direct dissemination of results via abstracts, publications and other forms of media.
The committee investigates merging relationships with external registries and databases and developing future research projects.

Business Advisory

What is the charge of this Committee?
  • Provide guidance to Intermacs concerning sustainability.
  • The committee is charged with developing a collaboration plan not limited to a Public/Private partnership that integrates industry and other non-NHLBI collaboration (hospitals) and financial support for the Intermacs enterprise on an increasing scale so that at the end of the five years the NHLBI financial contribution to maintain the registry would be significantly reduced.

Who makes up this committee?
  • Representatives from Intermacs
PI, DCC Director, Executive Director & Chair

  • Representatives from NHLBI
Project Officer

  • Representatives from Industry
Thoratec, Heartware and Syncardia

  • Representatives from Hospitals 
US Representative (Western) – TBD
US Representative (Central) – TBD
US Representative (Eastern) – TBD
Canadian Representative – TBD

Hospital Standards

The Hospital Standards Committee sets the criteria to become and maintain membership in Intermacs.  It also establishes policies and procedures to insure satisfactory performance from participating hospitals. Oversight is provided for staff training of participating hospitals in registry methods of data collection such that eligible hospitals can be certified to participate in the registry.  This committee reviews hospitals that fail to meet or maintain performance standards, and provides remedial or educational efforts to reestablish compliance.

Data Access, Analysis, and Publications

The Data Access, Analysis, and Publications Committee addresses issues of access to registry data for proposed research, review of publications, proposed analyses which feature Intermacs data, and prioritization of such activities. Recommendations are provided to the Executive Committee about specific analyses which are most useful in addressing the objectives of the registry and the research hypotheses. Interaction between statisticians involved in various aspects of the registry facilitates proper study design, data management and analyses.

Quality of Life

Research in Quality of Life (QoL) is essential so that health care providers can inform patients regarding likely QoL outcomes as they make decisions regarding MCSD implantation and identify risk factors for worsening QoL in order to develop and test interventions to maximize QoL for MCSD patients in the future.