International TTX Registry Steering Committee Charter

Committee Composition

• The International Thoracic Organ Transplant Registry Committee shall consist of the Medical Director, a Senior and an  Associate Medical Director for Adult Heart Transplantation, a Senior and an Associate Medical Director for Adult Lung/Heart-Lung Transplantation, a Senior and an Associate Medical Director for Pediatric Heart Transplantation, a Senior and an Associate Medical Director for Pediatric Lung/Heart-Lung Transplantation, an Associate Medical Director for Outcomes, an Associate Director for rgan exchange organization (OEO) Relations, an Associate Director for Biostatistics, and staff from the data coordinating center contracted to manage the registry.
• The Medical Director shall be appointed by the Board for a five-year term, renewable once.
• Committee members shall be appointed by the Medical Director and approved by the Board for 5-year, non-renewable, staggered terms. In the first 2 years they will overlap and work along with the current Associate Director. In their last 2 years they will provide mentorship to the incoming Associate Medical Director.
• Before the appointment of a new committee member is due, relevant Council Chairs will be approached and asked to solicit nominations from among the Council’s membership for appointment to the Committee. Such nominations shall be submitted to the Chair for consideration.

Medical Director Responsibilities

• The Medical Director shall serve as an ex-officio, non-voting member of the Board.
• The Medical Director may receive an annual stipend established by the Board of Directors.
• The Medical Director must report to the Board, to include the following:
  • Summary of the prior year data collection
  • Status of deliverables from the prior year
  • List of publications arising from the registry during the prior year
  • Assessment of need to continuing to operate registry
  • Plans for the coming year including proposed deliverables / publications
• The duties of the Medical Director shall include maintaining the scientific integrity of the Registry, working within the budget as set by the Board of Directors, and achieving the goals and objectives set for the Registry.
• The Medical Director shall develop and form relationships with governmental and professional organizations worldwide overseeing thoracic organ transplantation and transplant data collection.

Committee Responsibilities

• Oversee the operation of the registry and monitor its ongoing progress, participation rates, and cost-benefit ratio.
• Conduct regular evaluations regarding the need to continue to operate the registry.
• Identify and revise, as needed, data collection fields and definitions that facilitate the collection of appropriate information.
• Interface with individual centers and organ exchange organizations to encourage submission of data to the Registry.
• Interface with individual centers and organ exchange organizations to enhance compliance with data collection.
• Review abstracts and manuscripts generated with the use of Registry data prior to submission for peer-review/publication.
• Review results of data collection and generate regular Annual Data Reports.
• Authorize, review, and approve the submission of requests for access to the data for scientific studies.
• Initiate and facilitate data analysis projects.
• Oversee compliance with data use agreements.
• Achieve the goals and objectives established annually by the Board for the Registry.