Boards & Committees - Registries and Databases
REGISTRIES AND DATABASES COMMITTEE
INT'L THORACIC REGISTRY MEDICAL DIRECTOR AND COMMITTEE CHAIR:BOARD OF DIRECTORS LIAISON:BIOSTATISTICIAN FOR THE INTERNATIONAL THORACIC, INTERNATIONAL PEDIATRIC HEART FAILURE, and INTERNATIONAL DONATION AFTER CARDIAC DEATH (DCD) REGISTRIES:IMACS REGISTRY COMMITTEE CHAIR:
(Please see instructions below.)
- The Registries and Databases Committee shall be chaired by the Medical Director of the Thoracic Transplant Registry.
- The Chair of each ISHLT Registry or Database Steering Committee, the biostatistician for each ISHLT Registry or Database, and up to three additional members appointed by the Committee Chair to serve three year terms shall constitute the membership of the committee.
- Develop and revise, as needed, criteria, policies, and standards to which all ISHLT registries and databases must conform, to include the following: data field development, patient data privacy, data definitions, data collection protocols, data use protocols, data distribution protocols, data analysis, institutional enrollment, data protection, data validity and integrity.
- Ensure, to the greatest extent possible, uniformity across ISHLT registries and databases in terms of data fields, data definitions, patient identifiers, etc.
- Review and evaluate proposals for new registries and databases generated by the Scientific Councils, determine priorities, work with the Committee Chair to complete formal proposals, inclusive of budget, to be presented to the Board, and make recommendations to the Board regarding approval of such proposals.
- Ensure that input from all the Society constituencies is obtained during the development of any new Registry.
- Establish an ad hoc Implementation Task Force to oversee the implementation process for each newly established Registry.
- Assist Society members with Registry Award and Registry Data Request submissions.
- Provide mentorship to, and facilitate identification of appropriate mentors for, investigators interested in applying for the ISHLT Transplant Registry Early Career Award.
Discussion with the R&DC Chair is strongly encouraged
before completion and submission of a new registry application.
- An must be completed in collaboration with the leadership of one of more ISHLT Scientific Councils.
- Once final and approved by the appropriate Scientific Council Operating Board(s), the Initial Application should be submitted by the Council-designated Project Lead to the Registries and Databases Committee (R&DC) Chair via the ISHLT office (firstname.lastname@example.org)
- The R&DC will perform a review of the Initial Application and will request additional information from the applicant if needed.
- The R&DC will submit the Initial Application with its review and recommendation to the ISHLT Board of Directors (BoD) at its next meeting (usually held in January, April, and October).
- For applications of interest, the BoD will request that a Follow-up Application be submitted. Please submit the Follow-up Application only if you have been requested to do so by the R&DC.
- The must be completed in collaboration with the leadership of the appropriate ISHLT Scientific Council(s).
- Once final and approved by the appropriate Scientific Council Operating Board(s), the Follow-up Application should be submitted by the Council-designated Project Lead to the Registries and Databases Committee (R&DC) Chair via the ISHLT office (email@example.com).
- The R&DC will perform a review of the Follow-up Application and will request additional information from the applicant if needed.
- Staff will work with the applicants, the Finance Committee, and the R&DC to develop a preliminary cost estimate for the development and operation of the proposed Registry.
- The R&DC and BoD will evaluate the Follow-up Application in conjunction with the cost estimate and will make a final decision regarding approval of the proposed Registry.
IMACS REGISTRY BIOSTATISTICIAN:INT'L PEDIATRIC HEART FAILURE REGISTRY COMMITTEE CHAIR:INT'L DONATION AFTER CARDIAC DEATH (DCD) REGISTRY COMMITTEE CHAIR:
University of Alabama at Birmingham
Birmingham, Alabama, USA