2002 ishlt the registry of the international society for heart and lung transplantation: nineteenth...
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2002ISHLT
THE REGISTRY OF THE INTERNATIONAL SOCIETY
FOR HEART AND LUNG TRANSPLANTATION: NINETEENTH ANNUAL
REPORT
2002ISHLT
Major Contributors to the ISHLT Transplant Registry
Eurotransplant (ET):
Austria Netherlands
Belgium Slovenia
Germany
United Kingdom Transplant Services Authority (UKTSSA):
United Kingdom Ireland
United Network for Organ Sharing (UNOS):
United States
75 Individual centers from Canada, Central/South America, Europe, Asia, Australia, and Africa (reporting transplants since 1995)
2002ISHLT
ACKNOWLEDGMENTS:
We wish to extend our sincere thanksto the many thoracic transplant surgeons, physicians and data coordinators in transplant programsthroughout the world whose timely and accurate submission of data hasmade these analyses possible.
2002ISHLT
ISHLT International Heart and Lung Transplant RegistryProposed Mission Statement (8/24/01)
The ISHLT International Heart and Lung Transplant Registry was created to advance the state of knowledge and patient care regarding therapies for the failing heart and lung. This mission is accomplished by maintaining a repository of the worldwide thoracic organ transplant experience and by fostering related outcomes research in order to:
1. Create new knowledge related to advanced heart and lung failure and transplantation;
2. Serve as a resource for healthcare providers seeking information regarding patient care;
2002ISHLT
ISHLT International Heart and Lung Transplant RegistryProposed Mission Statement (8/24/01)
3. Provide benchmark aggregate date for use by individual centers to assess their center-specific practices and outcomes;
4. Serve as a resource for governmental agencies worldwide when formulating public policy regarding thoracic organ transplantation;
5. Serve as a resource for patient-related organizations and pharmaceutical companies regarding disease-specific therapies and transplant outcomes
(cont’d)
2002ISHLT
Goals of New Registry Structure1. Increase the number of publications/studies using
Registry data
2. Increase the number of non-US reporting centers
3. Optimize the data quality and integrity
4. Improve the process of receiving, processing and fulfilling data and analysis requests
5. Develop sources of external funding
6. Develop a formal publication policy regarding the use of Registry data
7. Increase the number of centers reporting data online
8. Redefine and improve the working relationship with UNOS Registry staff
2002ISHLT
Goals of New Registry Structure(cont’d)
9. Optimize the value and image of the Registry to the Society, its members, and the external research community
10. Identify patient-related organizations and pharmaceutical companies and make them aware of the Registry as a resource
11. Restructure the data fields into a tiered system and increased the number of required fields
12. Increase the number of reporting agreements with non-US government regulatory agencies (i.e, Swiss Transplant, France Transplant, Scandia Transplant, etc.)
2002ISHLT
REGISTRY STEERING COMMITTEE
Marshall Hertz – Medical Director
Elbert Trulock – Associate Director for Lung Transplantation
David O. Taylor – Associate Director for Heart Transplantation
Mark Boucek – Associate Director for Pediatric Transplantation
Paul Mohacsi – Associate Director for Non-US Centers
Amanda Rowe – ISHLT Executive Director
Berkeley Keck – Associate Director for Database Management
Leah Bennett Edwards – Associate Director for Data Analysis
2002ISHLT
General Registry Statistics
2002ISHLT
REGISTRY DATABASE:Number of Transplants Performed
ORGAN Transplants Reported Through 2001
Heart 61533
Heart-Lung 2935
Lung 14588
2002ISHLT
REGISTRY DATABASE:Number of Centers Reporting Transplants
OrganEver
Reported Data
Centers Reporting
Transplants in 1993
Centers Reporting
Transplants in 2001
Centers with Continuous reporting through
2001
% of 2001 centers that
are continuous reporters
Heart 328 230 200 183 91.5
Heart-Lung
128 60 35 15 42.9
Lung 181 102 99 82 82.8
2002ISHLT
REGISTRY DATABASE:Number of Centers Reporting Heart Transplants
0
50
100
150
200
250
1980
1981
1982
1983
1984
1985
1986
1987
1988
1989
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
*
Year of Transplant
# o
f C
ente
rs R
epo
rtin
g
* Numbers may be low due to delayed reporting
2002ISHLT
REGISTRY DATABASE:Number of Centers Reporting Lung Transplants
0
25
50
75
100
125
1987
1988
1989
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
*
Year of Transplant
# o
f C
en
ters
Re
po
rtin
g
* Numbers may be low due to delayed reporting
2002ISHLT
REGISTRY DATABASE:Number of Centers Reporting Heart-Lung Transplants
0
10
20
30
40
50
60
70
1985
1986
1987
1988
1989
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
*
Year of Transplant
# o
f C
ente
rs R
epo
rtin
g
* Numbers may be low due to delayed reporting
2002ISHLT
APPENDIX
2002ISHLT
Centers Reporting to the ISHLT Transplant Registry
COUNTRY/CenterTransplants Performed in
2000 and Reported to ISHLTTransplants Performed in
2001 and Reported to ISHLT
ARGENTINA
Fundacion Favaloro x x
AUSTRALIA
St. Vincent x x
The Prince Charles Hospital x x
The Alfred Hospital x
Royal Perth Hospital x x
AUSTRIA
University of Vienna x x
Innsbruck University Hospital x x
University Klin fur Chir (Graz) x x
BELGIUM
Erasme Univ. Hospital (Brussels) x x
Univ. Hospital Gasthuisberg (Leuven) x x(Cont’d)
2002ISHLT
Centers Reporting to the ISHLT Transplant Registry
COUNTRY/CenterTransplants Performed in
2000 and Reported to ISHLTTransplants Performed in
2001 and Reported to ISHLT
BELGIUM (cont’d)
University Hospital Antwerp x x
OLV Hospital (Aalst) x x
University Hospital Gent x x
Centre Hospitalier Universitaire de Liege, CHU Sart-Tilman
x x
CANADA
Royal Victoria Hospital x x
Montreal Heart Institute x x
The Toronto General Hospital x x
Quebec Heart Institute - Laval Hospital
x x
Ottawa Heart Institute x x
Univ. of Alberta Hospitals/ Walter C. Mackenzie Health Sciences
x x
(Cont’d)
2002ISHLT
Centers Reporting to the ISHLT Transplant RegistryCOUNTRY/Center
Transplants Performed in 2000 and Reported to ISHLT
Transplants Performed in 2001 and Reported to ISHLT
CANADA (cont’d)
St. Paul x x
Vancouver General Hospital x x
The Hospital for Sick Children x x
CHILE
Hospital DIPRECA x
Clinica Las Condes x
FRANCE
Hopital Cardiolgique x x
Hopital La Pitie x x
GERMANY
Organisationsbuero des K.F.H. (Homburg/Saar)
x x
Martin-Luther Universitaet Halle x x
Technischen Universitaet Dresden x x(Cont’d)
2002ISHLT
Centers Reporting to the ISHLT Transplant Registry
COUNTRY/CenterTransplants Performed in
2000 and Reported to ISHLTTransplants Performed in
2001 and Reported to ISHLT
GERMANY (cont’d)
German Heart Institute (Berlin) x x
Universitat Hamburg x x
Universitaetsklinik (Koeln) x x
University of Leipzig - Heart Center x x
Kerckoff-Klinik der Max-Planck-Gesellschaft zur Forderung der Wissenschaften e.V. (Bad Nauheim)
x x
Klinikum der Universitaet (Heidelberg) x x
Herz-und Diabetesentrum Nordrhein -Westfalen (Bad Oeynhausen)
x x
Chirurgische Universitaetsklinik/ Univ. Rostock (Freiburg Im Breisgau)
x x
Essen University Medical School x x
I. Med. Klinik J. Gutenberg (Mainz) x x(Cont’d)
2002ISHLT
Centers Reporting to the ISHLT Transplant Registry
COUNTRY/CenterTransplants Performed in
2000 and Reported to ISHLTTransplants Performed in
2001 and Reported to ISHLT
GERMANY (cont’d)
der Heinrich-Heine-Universitat Dusseldorf
x x
Klinikum GroBhadern, Ludwig-Maximilians-Universitat Munchen
x x
Klinikum der Universitat Kaiserslautern
x
Chirurgische Universitatsklinik Heidelberg
x x
Medizinische Hochschule Hannover x x
Universitatsklinik Gottingen x x
Klinikum der Rheinisch-Westfalischen Technischen Hochschule Aachen
x x
Fulda Medical Center x x
(Cont’d)
2002ISHLT
Centers Reporting to the ISHLT Transplant Registry
COUNTRY/CenterTransplants Performed in
2000 and Reported to ISHLTTransplants Performed in
2001 and Reported to ISHLT
GERMANY (cont’d)
Klinikum der J. W. Goethe University (Frankfurt am Main)
x x
Klinikum Der Christian-Albrechts-Universtat zu Kiel
x x
Transplantations-Zentrum (Frankfurt) x x
Friedrich Schiller Universitaet (Jena) x x
Klinikum Karlsburg x
Klinik fuer Herzchirurgie Karlsruhe x x
Medizinische Einrichtupgen der Universiteat , Nurenberg
x x
Chirurgische Univ. Klinik/Julius Maxmillians Universitaet (Wurzburg)
x
GREECE
Onassis Cardiac Surgery Center x x(Cont’d)
2002ISHLT
Centers Reporting to the ISHLT Transplant Registry
COUNTRY/CenterTransplants Performed in
2000 and Reported to ISHLTTransplants Performed in
2001 and Reported to ISHLT
IRELAND
Mater Hospital x x
ISRAEL
Sheba Medical Center x x
Hadassah University Hospital x
ITALY
Policlinico S. Orsola - Universita degli Studi
x
JAPAN
Tohoku University, IDAC Hospital x
Osaka University Hospital x x
(Cont’d)
2002ISHLT
Centers Reporting to the ISHLT Transplant Registry
COUNTRY/CenterTransplants Performed in
2000 and Reported to ISHLTTransplants Performed in
2001 and Reported to ISHLT
NETHERLANDS
Heart-Lung Institute, University Hospital Utrecht
x x
Thoraxcenter - University Hospital Rotterdam
x x
University Hospital Groningen x x
NEW ZEALAND
Green Lane Hospital x x
NORWAY
Rikshospitalet - National Hospital of Norway
x
SINGAPORE
National Heart Centre x
SLOVENIA
University Medical Center Ljubljana x x(Cont’d)
2002ISHLT
Centers Reporting to the ISHLT Transplant Registry
COUNTRY/CenterTransplants Performed in
2000 and Reported to ISHLTTransplants Performed in
2001 and Reported to ISHLT
SWEDEN
University Hospital of Lund x x
SWITZERLAND
Bern University Hospital x x
UNITED STATES
University of Alabama Hospital x x
Baptist Medical Center, x x
Arkansas Children’s Hospital x x
The University Hospital of Arkansas x x
University Medical Center, University of AZ
x x
Children’s Hospital Los Angeles x x
Cedars Sinai Medical Center x x
Loma Linda Univ. Medical Center x x
(Cont’d)
2002ISHLT
Centers Reporting to the ISHLT Transplant Registry
COUNTRY/CenterTransplants Performed in
2000 and Reported to ISHLTTransplants Performed in
2001 and Reported to ISHLT
UNITED STATES (cont’d)
California Pacific Medical Center x x
UCSD Medical Center x x
University of CA San Francisco Medical Center
x x
Sutter Memorial Hospital x x
Sharp Memorial Hospital x x
UC Davis Medical Center x
Stanford University Medical Center x x
St Vincent Medical Center x x
UCLA Medical Center x x
USC University Hospital x x
The Children’s Hospital, Denver x x
University Hospital, Denver x x
(Cont’d)
2002ISHLT
Centers Reporting to the ISHLT Transplant Registry
COUNTRY/CenterTransplants Performed in
2000 and Reported to ISHLTTransplants Performed in
2001 and Reported to ISHLT
UNITED STATES (cont’d)
Hartford Hospital x x
Yale New Haven Hospital x x
Children’s National Medical Center x
Washington Hospital Center x x
All Children’s Hospital x x
Jackson Memorial Hospital x x
St Luke’s Hospital x
Tampa General Hospital x x
Tallahassee Memorial Hospital x x
Shands Hospital at University of Florida
x x
Egleston Children’s Hospital x x
Emory University Hospital x x
(Cont’d)
2002ISHLT
Centers Reporting to the ISHLT Transplant Registry
COUNTRY/CenterTransplants Performed in
2000 and Reported to ISHLTTransplants Performed in
2001 and Reported to ISHLT
UNITED STATES (cont’d)
St Joseph Hospital of Atlanta x x
St Francis Medical Center, Honolulu x x
Univ. of Iowa Hospital and Clinics x x
Children’s Memorial Hosp x x
Loyola University Medical Center x x
Northwestern Memorial Hospital x
Rush Pres St Luke’s Medical Center x x
OSF St Francis Medical Center x x
St. Johns Hospital x
Univ. of Chicago Medical Center x x
University of Illinois Hospital x x
Clarian Health-Methodist/IU/Riley x x
Indiana University Medical Center x x(Cont’d)
2002ISHLT
Centers Reporting to the ISHLT Transplant Registry
COUNTRY/CenterTransplants Performed in
2000 and Reported to ISHLTTransplants Performed in
2001 and Reported to ISHLT
UNITED STATES (cont’d)
Lutheran Hospital of Ft Wayne x x
St Vincent Hosp. and Health Care Ctr x x
Via Christi Regional Medical Center x x
Jewish Hospital x x
Kosair Children’s Hospital x
Univ. of Kentucky Medical Center x x
Ochsner Foundation Hospital x x
Tulane University Medical Center x x
Willis Knighton Medical Center x x
Children's Hospital, Boston x x
Massachusetts General Hospital x x
New England Medical Center x x
Brigham and Women’s Hospital x x(Cont’d)
2002ISHLT
Centers Reporting to the ISHLT Transplant Registry
COUNTRY/CenterTransplants Performed in
2000 and Reported to ISHLTTransplants Performed in
2001 and Reported to ISHLT
UNITED STATES (cont’d)
UMass Memorial Medical Center x
Johns Hopkins Hospital x x
Univ. of Maryland Medical System x x
Children’s Hospital of Michigan x x
Henry Ford Hospital x x
Univ. of Michigan Medical Center x x
Abbott Northwestern Hospital x x
St Marys Hospital, Rochester x x
Fairview University Medical Center x x
Barnes-Jewish Hospital x x
Cardinal Glennon Children’s Hospital x x
St Louis Children’s Hospital x x
St Lukes Hospital of Kansas City x x(Cont’d)
2002ISHLT
Centers Reporting to the ISHLT Transplant Registry
COUNTRY/CenterTransplants Performed in
2000 and Reported to ISHLTTransplants Performed in
2001 and Reported to ISHLT
UNITED STATES (cont’d)
St Louis University Hospital x x
Univ. of Missouri Hospital and Clinic x x
University of MS Medical Center x x
NC Baptist Hospital x x
Carolinas Medical Center x x
Duke University Medical Center x x
UNC Hospitals x x
Bryan LGH Medical Center East x x
Newark Beth Israel Medical Center x x
Robert Wood Johnson Univ. Hosp x x
Presbyterian Hospital, Albuquerque x x
Albany Medical Center Hospital x x
The Presbyterian Hospital in NY City x x(Cont’d)
2002ISHLT
Centers Reporting to the ISHLT Transplant Registry
COUNTRY/CenterTransplants Performed in
2000 and Reported to ISHLTTransplants Performed in
2001 and Reported to ISHLT
UNITED STATES (cont’d)
Strong Memorial Hospital x
Montefiore Medical Center x
Mt Sinai Medical Center x x
New York University Medical Center x
Westchester County Medical Center x
Cleveland Clinic Foundation x x
Children's Hospital Medical Center, Cincinnati
x x
Medical College Hospital, Toledo x x
Ohio State University Hospital x x
Univ. of Cincinnati Medical Center x x
University Hospital of Cleveland x x
Integris Baptist Medical Center x x
(Cont’d)
2002ISHLT
Centers Reporting to the ISHLT Transplant Registry
COUNTRY/CenterTransplants Performed in
2000 and Reported to ISHLTTransplants Performed in
2001 and Reported to ISHLT
UNITED STATES (cont’d)
St. Francis Hospital, Tulsa x x
Providence Portland Medical Center x x
Oregon Health Sciences Univ. Hosp x x
Allegheny General Hospital x x
Children’s Hospital of Pittsburgh x x
Children’s Hospital of Philadelphia x x
Penn State Milton S Hershey Med Ctr x x
Hahnemann University Hospital Tenet x x
Univ of Pittsburgh Medical Center x x
Temple University Hospital x x
The Hospital of the University of PA x x
Cardiovascular Center of PR x x
Medical University of SC x x(Cont’d)
2002ISHLT
Centers Reporting to the ISHLT Transplant Registry
COUNTRY/CenterTransplants Performed in
2000 and Reported to ISHLTTransplants Performed in
2001 and Reported to ISHLT
UNITED STATES (cont’d)
Baptist Memorial Hosp, Memphis x x
St Thomas Hospital x x
Vanderbilt University Medical Center x x
Brooke Army Medical Center x x
University Hospital, San Antonio x x
Children’s Medical Center of Dallas x x
Seton Medical Center x x
Columbia Hosp at Medical City Dallas x x
St Luke’s Episcopal Hospital x x
Methodist Specialty & Transplant Hosp
x x
University of Texas Medical Branch x x
The Methodist Hospital, Houston x x
(Cont’d)
2002ISHLT
Centers Reporting to the ISHLT Transplant Registry
COUNTRY/CenterTransplants Performed in
2000 and Reported to ISHLTTransplants Performed in
2001 and Reported to ISHLT
UNITED STATES (cont’d)
Christus Santa Rosa Medical Center x x
St Paul University Hospital x x
Baylor University Medical Center x x
LDS Hosp x x
University of Utah Medical Center x x
Primary Children’s Medical Center x x
Inova Fairfax Hosp x x
Henrico Doctors Hosp x x
MCV Hospitals x x
McGuire VA Medical Center x x
Sentara Norfolk General Hospital x x
University of Virginia HSC x x
Children’s Hosp Medical Ctr, Seattle x x(Cont’d)
2002ISHLT
Centers Reporting to the ISHLT Transplant Registry
COUNTRY/CenterTransplants Performed in
2000 and Reported to ISHLTTransplants Performed in
2001 and Reported to ISHLT
UNITED STATES (cont’d)
Sacred Heart Medical Center x x
Univ. of Washington Medical Center x x
Children’s Hospital of Wisconsin x x
Froedtert Memorial Lutheran Hosp x x
St Luke’s Medical Center x x
Univ. of Wisconsin Hosp. and Clinics x x
UNITED KINGDOM
Great Ormand Street Hospital for Children
x x
University of Glasgow/Glasgow Royal Infirmary
x x
Northern General Hospital x x
The Freeman Hospital x x
(Cont’d)
2002ISHLT
Centers Reporting to the ISHLT Transplant Registry
COUNTRY/CenterTransplants Performed in
2000 and Reported to ISHLTTransplants Performed in
2001 and Reported to ISHLT
UNITED KINGDOM (cont’d)
Harefield Hosp x x
Wythenshawe Hospital x x
St. George's Hospital x
Queen Elizabeth Hospital x x
Papworth Hospital x x
2002ISHLT
Data Currently Available on the ISHLT Web Site: http://www.ishlt.org
1. Quarterly reports of recent continent-specific statistics are available for general public: • Transplant counts• Tabulation of recipient, transplant and donor demographics• Survival rates stratified by demographics
2. Quarterly reports for center-specific data are available for each center through the secure section of the ISHLT web site.• If your center does not currently have access to the secure site,
contact Denise Wise to obtain an ID and password
3. Registry Report slides will be available for download from the ISHLT web site on August 1.
2002ISHLT
Requesting Data from the ISHLT RegistryData request form is available on the ISHLT web site: http://www.ishlt.org
PROCESS FOR SUBMITTING A DATA REQUEST:•Complete form and send to Amanda Rowe•Request will be reviewed by the appropriate Registry staff •If approved, request will be processed and programmed. •Results are usually sent out within 2 weeks of being received by analytical staff.
DATA/ANALYSES:•Datasets (patients and centers will not be identified) •Simple descriptive statistics •Multivariate analyses -- may require more extensive review