Boards & Committees - Registries and Databases



REGISTRIES AND DATABASES COMMITTEE


New ISHLT Registry Initial Application (word doc)
New ISHLT Registry Follow-up Application (word doc)

(Please see instructions below.)

COMMITTEE COMPOSITION
  • 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.


COMMITTEE RESPONSIBILITIES:
  • 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.


Instructions and Process for Proposing a New Registry:

NOTE:  Discussion with the R&DC Chair is strongly encouraged before completion and submission of a new registry application.

  1. An Initial Application must be completed in collaboration with the leadership of one of more ISHLT Scientific Councils.
  2. 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 (amanda.rowe@ishlt.org)
  3. The R&DC will perform a review of the Initial Application and will request additional information from the applicant if needed.
  4. 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).
  5. 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.
  6. The Follow-up Application must be completed in collaboration with the leadership of the appropriate ISHLT Scientific Council(s).
  7. 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 (amanda.rowe@ishlt.org).
  8. The R&DC will perform a review of the Follow-up Application and will request additional information from the applicant if needed.
  9. 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.
  10. 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.

INT'L THORACIC REGISTRY MEDICAL DIRECTOR AND COMMITTEE CHAIR:

Josef Stehlik, MD, MPH
ISHLT Thoracic Transplant Registry Medical Director

University of Utah
Salt Lake City, Utah, USA
801-585-2340
josef.stehlik@hsc.utah.edu

BOARD OF DIRECTORS LIAISON:

Stuart C. Sweet, MD, PhD
St. Louis Children's Hospital
St. Louis, Missouri, USA
314-454-2694
sweet@kids.wustl.edu
INT'L THORACIC REGISTRY BIOSTATISTICIAN:


Leah Edwards, PhD
United Network for Organ Sharing
Richmond, Virginia, USA
804-782-4945
Leah.Edwards@unos.org

IMACS REGISTRY COMMITTEE CHAIR:

James K. Kirklin, MD
University of Alabama at Birmingham
Birmingham, Alabama, USA
205-934-3368
jkirklin@uab.edu

IMACS REGISTRY BIOSTATISTICIAN:


TBD

INT'L PEDIATRIC HEART FAILURE REGISTRY COMMITTEE CHAIR:

Anne I. Dipchand, MD
Hospital for Sick Children
Toronto, ON, CANADA
416-813-6674
anne.dipchand@sickkids.ca

INT'L PEDIATRIC HEART FAILURE REGISTRY BIOSTATISTICIAN:


TBD

INT'L DONATION AFTER CARDIAC DEATH (DCD) REGISTRY COMMITTEE CHAIR:

Dirk Van Raemdonck, MD, PhD
University Hospital Gasthuisberg
Leuven, BELGIUM
32-16-34-68-23
dirk.vanraemdonck@uz.kuleuven.ac.be

INT'L DONATION AFTER CARDIAC DEATH (DCD) REGISTRY BIOSTATISTICIAN:


TBD

ADDITIONAL MEMBERS:


TBD
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