Boards & Committees - Registries and Databases

REGISTRIES AND DATABASES COMMITTEE
COMMITTEE LEADERSHIPQUICK LINKS
CHAIRUPCOMING EVENTS

Registries & Databases Committee Meeting (Old Town AB)
Registry Advisory Committee Meeting (Old Town AB)

Thursday, April 10, 2014
1:30 PM - 2:00 PM


R&D Committee Report to the Board (Gaslamp A-C)
Friday, April 11, 2014
7:00 PM

All events will take place at the Manchester Grand Hyatt Hotel, San Diego, CA, USA




COMMITTEE COMPOSITION
  • The Registries and Databases Committee shall be chaired by the Medical Director of the Thoracic Transplant Registry.
  • The leader of each Scientific Council Workforce on Registries and Databases shall serve on the Committee.
  • The Medical Director of each ISHLT Registry and Database shall serve on the Committee.
  • The Committee Chair shall appoint up to two additional members to serve as outcomes specialists.
  • The biostatistician for the Thoracic Registry shall serve on the committee.
COMMITTEE RESPONSIBILITIES
  1. Develop 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.
  2. Ensure, to the greatest extent possible, uniformity across registries and databases in terms of data fields, data definitions, patient identifiers, etc.
  3. Review and evaluate proposals for registries and databases generated by the Scientific Councils, determine priorities and costs, and make recommendations to the Board regarding approval of such proposals.
  4. Oversee the implementation of new registries and databases and monitor their ongoing progress, participation rates, and cost benefit ratio.
  5. Conduct regular evaluations regarding the need to continue to operate existing registries and databases.
  6. Act as liaison between the Scientific Council Workforces on Registries and Standards and the Board to facilitate the presentation of well structured proposals for the board's consideration, with appropriate budget proposals


Councils wishing to submit a proposal for a mini registry can obtain an application from the ISHLT Headquarters.
Josef Stehlik, MD, MPH
University of Utah
Salt Lake City, Utah, USA
801-585-2340
josef.stehlik@hsc.utah.edu

Josef Stehlik, MD, MPH is an Associate Professor of Medicine at the University of Utah School of Medicine. Dr. Stehlik received his medical degree from Charles University in Prague and Masters in Public Health degree from Harvard School of Public Health. He completed his training in Internal Medicine and in Cardiovascular Diseases at Allegheny General Hospital, MCP*Hahnemann University and advanced training in Heart Failure and Transplantation at the Cleveland Clinic. Dr. Stehlik has been on faculty at the University of Utah since 2004 and serves as Medical Director of the Heart Transplant Program at the University of Utah Hospital and the Salt Lake City Veterans Affairs Medical Center. He has been active in clinical work, education and research in the areas of advanced heart failure, heart transplantation and mechanical circulatory support.
COUNCIL WORKFORCE LEADERS
BSTR COUNCIL REPRESENTATIVE
Octavio E. Pajaro, MD, PhD
Mayo Clinic
Phoenix, AZ, USA
480-342-2270
pajaro.octavio@mayo.edu

Bio coming soon...
HFTM COUNCIL REPRESENTATIVE
TBA
ID COUNCIL REPRESENTATIVE
Denis Hadjiliadis, MD
University of Pennsylvania
Philadelphia, Pennsylvania, USA
215-615-3871
hadjiliadisdenis@hotmail.com

Dr Hadjiliadis is the Paul F Harron Jr Associate Professor of Medicine and the Director of the Adult Cystic Fibrosis Program at the University of Pennsylvania and a member of the Lung Transplant Program at the University of Pennsylvania. He is also the physician leader of the Advanced Lung Disease Research Group. Dr Hadjiliadis completed his medical degree at the University of Toronto, his Internal Medicine residency at the Mayo Clinic and his Pulmonary and Critical Care fellowship at Duke University Medical Center. He subsequently completed an advanced fellowship in Lung Transplantation and Cystic Fibrosis at the University of Toronto and joined its faculty prior to coming to the University of Pennsylvania. His main interests include patient selection and outcomes in lung transplantation, clinical trials in cystic fibrosis and prediction of outcomes and complications in cystic fibrosis. He is board certified by ABIM in Internal Medicine, Pulmonary Disease and Critical Care and by the Royal College of Physicians and Surgeons of Canada in Internal medicine and Respirology.
JUNIOR FACULTY & TRAINEE COUNCIL REPRESENTATIVE
Keyur B. Shah, MD
Virginia Commonwealth University
Richmond, Virginia, USA
804-828-4571
kshah@mcvh-vcu.edu

Dr. Shah is an Assistant Professor  in the Division of Cardiology at Virginia Commonwealth University Hospital System (formerly Medical College of Virginia) in Richmond, VA. Dr. Shah completed both his residency in internal medicine and fellowship training at the University of Maryland, Baltimore, MD. Dr. Shah’s clinical interests include  heart failure, heart transplantation, pulmonary hypertension and mechanical circulatory support.  He is the Medical Director of the Mechanical Circulatory Support Program at VCU.
MCS COUNCIL REPRESENTATIVE
Vivek Rao, MD, PhD
Toronto General Hospital
Toronto, Ontario, CANADA
416-340-3562
vivek.rao@uhn.on.ca

Dr. Vivek Rao is the Chief of Cardiovascular Surgery and Professor of Surgery at the Toronto General Hospital where he is the Surgical Director of the Heart Transplant program. Dr. Rao completed his medical and surgical training at the University of Toronto prior to completing a fellowship in cardiac transplantation and mechanical circulatory support at New York’s Columbia-Presbyterian Hospital. In addition to performing a wide variety of cardiac surgical procedures, Dr. Rao is a recognized expert in heart failure surgery. He currently holds the Munk Chair in Advanced Cardiac Therapeutics at the Peter Munk Cardiac Center, Toronto General Hospital. In 2006, he was named as one of Canada’s “Top 40 under 40” by Caldwell Partners International.
NHSAH COUNCIL REPRESENTATIVE
Sharon A. Beer, RN, MSc
Old Queen Elizabeth Hospital
Birmingham, UNITED KINGDOM
44-121-627-2544
sharon.beer@uhb.nhs.uk

Bio coming soon...
PATH COUNCIL REPRESENTATIVE
Robert F. Padera, MD, PhD
Brigham & Women's Hospital
Boston, Massachusetts, USA
617-525-6792
rpadera@partners.org

Robert Padera, MD, PhD, is Assistant Professor of Pathology at Harvard Medical School. He earned his MD from Harvard Medical School, his PhD from the Massachusetts Institute of Technology,and completed his residency at Brigham and Women's Hospital. His clinical specialties are in autopsy pathology, cardiac pathology, and pulmonary pathology. Dr. Padera's research interests include biotechnology, lung cancer, mouse models and transplant pathology.
PEDS COUNCIL REPRESENTATIVE
Scott R. Auerbach, MD
University of Colorado
Aurora, Colorado, USA
scott.auerbach@childrenscolorado.org

Bio coming soon...
PHARM COUNCIL REPRESENTATIVE
Tam Khuu, PharmD, BCPS
University of California, Los Angeles
Los Angeles, California, USA
310-794-9563
TKhuu@mednet.ucla.edu

Tam Khuu is the Clinical Pharmacist for the Advanced Heart Failure/Mechanical Support/Heart Transplant Program at the Ronald Reagan UCLA Medical Center in Los Angeles, California. In addition to clinical services, she plays an active role in education of fellows, residents, and students. Dr. Khuu has authored several articles in the areas of therapeutic drug monitoring, immunosuppression pharmacology, and infectious disease. Dr. Khuu received her pharmacy training at the University of California, San Francisco and completed her residency training at City of Hope in Duarte, California. She is Board Certified in Pharmacotherapy.
PH COUNCIL REPRESENTATIVE
Ivan Robbins, MD
Vanderbilt University Medical Center
Nashville, Tennessee, USA
615-322-6512
ivan.robbins@vanderbilt.edu

Bio coming soon...
PULM TX COUNCIL REPRESENTATIVE
Roger D. Yusen, MD, MPH
Washington University School of Medicine
St. Louis, Missouri, USA
314-454-8764
ryusen@dom.wustl.edu

Roger Yusen, MD, MPH, is an Associate Professor of Medicine in the Division of Pulmonary and Critical Care Medicine at Washington University School of Medicine (WUSM) in St. Louis, Missouri, USA. He is a lung transplant pulmonologist and the medical director of the lung volume reduction surgery program at WUSM and Barnes-Jewish Hospital. He focuses his research efforts on technology assessment in pulmonary and transplant medicine.
ADDITIONAL MEMBERS
OUTCOMES SPECIALIST
Maria G. Crespo-Leiro, MD
Hospital Universitario A. Coruna y Trasplante Cardiaco
La Coruna, SPAIN
34-981-178-304
marisacrespo@gmail.com

Maria G (Marisa) Crespo-Leiro, MD, PhD, FESC, is the Medical Director of the Advanced Heart Failure Transplant Unit at the Hospital Universitario A Coruña, La Coruña, Spain.  She obtained her MD degree at the University of Santiago de Compostela, her specialization in cardiology at Clinica Puerta de Hierro in Madrid and her PhD from Universidad Autónoma de Madrid. Since 1993 she has been working in the Heart Division at the Hospital Universitario A Coruña (formerly the Hospital Universitario Juan Canalejo) in La Coruña, where she is also Associate Professor of Medicine. Her main fields of research interest are heart failure and heart transplantation.
BIOSTATISTICS
Leah Edwards, PhD
United Network for Organ Sharing
Richmond, Virginia, USA
804-782-4945
Leah.Edwards@unos.org

Bio coming soon...
SAS ANALYST
Jaime Williamson
ISHLT Registry
Richmond, Virginia, USA
804-782-4945
Jaime.Williamson@unos.org

Bio coming soon...
TII LIAISON
Kathryn A. Philibin, RN
ISHLT/UNOS
Richmond, Virginia, USA
804-782-4854
Kathryn.Philibin@unos.org

Bio coming soon...
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