Registries - Pediatric Heart Failure Registry > Steering Committee



INTERNATIONAL PEDIATRIC HEART FAILURE REGISTRY (IPHFR)
STEERING COMMITTEE

(Parentheses after name indicates year rotating off Committee)


PAST COMMITTEE MEETING:
Thursday, April 6, 2017, 12:30 PM - 2:00 PM
in Old Town B of the Manchester Grand Hyatt Hotel, San Diego, CA, USA, during the ISHLT 37th Annual Meeting and Scientific Sessions

Minutes from the April 2017 Committee Meeting



COMMITTEE COMPOSITION

  • The Chair of the IPHF Registry Steering Committee shall be appointed by the Board of Directors for a three-year term, renewable once.
  • One representative to the Committee shall be appointed by each collective actively submitting data to the Registry.
  • The biostatistician for the Registry shall serve a member of the Committee.
  • Additional Committee members will be selected by the Chair and approved by the Board. Such Committee members shall be selected to ensure specialty expertise and geographic representation from areas contributing to the Registry. Such Committee members will be appointed to serve 3-year staggered terms.
  • Before the appointment of a new Committee member is due, relevant Council Chairs shall be asked to solicit nominations from among their Council's membership for appointment to the Committee and shall submit such nominations to the Chair for consideration.
  • The Chair may receive an annual stipend if determined by the Board of Directors to be warranted.
  • The Chair 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 continue to operate the registry
    • Plans for the coming year including proposed deliverables / publications
  • The duties of the Chair 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.
COMMITTEE RESPONSIBILITIES
  • Oversee the implementation of the registry and monitor its ongoing progress, participation rates, and cost benefit ratio.
  • Ensure the deliverables charged by the Board are met on a timely basis.
  • 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 governmental agencies, international transplant networks, and individual centers to encourage their submission of data to the Registry and to enhance compliance with data submission.
  • Review abstracts and manuscripts generated with the use of Registry data prior to submission for peer-review/publication.
  • Review results of data collection and produce 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

COMMITTEE CHAIR
Anne I. Dipchand, MD (2018)
Hospital for Sick Children
Toronto, ON, CANADA
416-813-6674
anne.dipchand@sickkids.ca



BOARD OF DIRECTORS LIAISON
Jeffrey J. Teuteberg, MD
University of Pittsburgh/Presbyterian
Pittsburgh, Pennsylvania, USA
412-647-7168
teutebergjj@upmc.edu



Christopher Almond, MD (2018)
Stanford University
Palo Alto, CA, USA
617-355-6329
calmond@stanford.edu



Scott Auerbach, MD (2018)
University of Colorado
Aurora, CO, USA
scott.auerbach@childrenscolorado.org



Estela Azeka, MD (2018)
University of Sao Paulo
Sao Paulo, BRAZIL
113-812-9221
estela_azeka9@hotmail.com



Wida S. Cherikh, PhD
United Network for Organ Sharing
Richmond, Virginia, USA
804-782-4899
Wida.Cherikh@unos.org



Robert Gajarski, MD (2017)
University of Michigan CS Mott Children's Hospital
Ann Arbor, MI, USA
734-615-2369
rjgaj@med.umich.edu



Richard Kirk, FRCP, FRCPCH (2018)
UT Southwestern Medical Center
Dallas, TX, USA
469-866-6786
richard.kirk@UTsouthwestern.edu



Yuk Law, MD (2017)
Seattle Children's Hospital
Seattle, WA, USA
206-987-4233
yuk.law@seattlechildrens.org



Angela Lorts, MD (2018)
Cincinnati Children's Hospital
Cincinnati, OH, USA
513-803-1747
angela.lorts@cchmc.org



Elfriede Pahl, MD (2017)
Ann & Robert H Lurie Children's Hospital
Chicago, IL, USA
312-227-4100
epahl@luriechildrens.org



Christina VanderPluym, MD (2018)
Boston Children's Hospital
Boston, MA, USA
617-620-7442
christina.vanderpluym@childrens.harvard.edu



Warren Zuckerman, MD (2017)
Columbia University Medical Center
New York, NY, USA
212-305-6575
wz2116@columbia.edu



COMMITTEE CHAIR
Anne I. Dipchand, MD (2018)
Hospital for Sick Children
Toronto, ON, CANADA
416-813-6674
anne.dipchand@sickkids.ca
BOARD OF DIRECTORS LIAISON
Jeffrey J. Teuteberg, MD
University of Pittsburgh/Presbyterian
Pittsburgh, Pennsylvania, USA
412-647-7168
teutebergjj@upmc.edu
Christopher Almond, MD (2018)
Stanford University
Palo Alto, CA, USA
617-355-6329
calmond@stanford.edu
Scott Auerbach, MD (2018)
University of Colorado
Aurora, CO, USA
scott.auerbach@childrenscolorado.org
Estela Azeka, MD (2018)
University of Sao Paulo
Sao Paulo, BRAZIL
113-812-9221
estela_azeka9@hotmail.com
Wida S. Cherikh, PhD
United Network for Organ Sharing
Richmond, Virginia, USA
804-782-4899
Wida.Cherikh@unos.org
Robert Gajarski, MD (2017)
University of Michigan CS Mott Children's Hospital
Ann Arbor, MI, USA
734-615-2369
rjgaj@med.umich.edu
Richard Kirk, FRCP, FRCPCH (2018)
UT Southwestern Medical Center
Dallas, TX, USA
469-866-6786
richard.kirk@UTsouthwestern.edu
Yuk Law, MD (2017)
Seattle Children's Hospital
Seattle, WA, USA
206-987-4233
yuk.law@seattlechildrens.org
Angela Lorts, MD (2018)
Cincinnati Children's Hospital
Cincinnati, OH, USA
513-803-1747
angela.lorts@cchmc.org
Elfriede Pahl, MD (2017)
Ann & Robert H Lurie Children's Hospital
Chicago, IL, USA
312-227-4100
epahl@luriechildrens.org
Christina VanderPluym, MD (2018)
Boston Children's Hospital
Boston, MA, USA
617-620-7442
christina.vanderpluym@childrens.harvard.edu
Warren Zuckerman, MD (2017)
Columbia University Medical Center
New York, NY, USA
212-305-6575
wz2116@columbia.edu
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