Boards & Committees - Registries and Databases

Registries and Databases Committee


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.


Councils wishing to submit a proposal for a mini registry can obtain an application from the ISHLT Headquarters.
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:

TBD

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


TBD

ADDITIONAL MEMBERS:


TBD
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