Major Contributors to the ISHLT Transplant Registry

2003ISHLTJ Heart Lung Transplant 2003; 22: 610-72.

THE REGISTRY OF THE INTERNATIONAL SOCIETY

FOR HEART AND LUNG TRANSPLANTATION: TWENTIETH ANNUAL

REPORT


Major Contributors to the ISHLT Transplant Registry

Eurotransplant (ET):

Austria Germany Slovenia

Belgium Netherlands

Scandiatransplant:

Denmark Norway

Finland Sweden

United Kingdom Transplant Services Authority (UKTSSA):

United Kingdom Ireland

United Network for Organ Sharing (UNOS):

United States

74 Individual centers from Canada, Central/South America, Europe, Asia, and Australia/Oceania reporting transplants since 1995


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.


ISHLT International Heart and Lung Transplant Registry Mission Statement

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;


ISHLT International Heart and Lung Transplant Registry Mission Statement

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)


Goals of Registry1. 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


Goals of Registry(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, etc.)


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


General Registry Statistics


REGISTRY DATABASE:Number of Transplants Performed

ORGAN Transplants Reported Through 6/30/2002

Heart 62,851

Heart-Lung 2,955

Lung 15,199


REGISTRY DATABASE:Number of Centers Reporting Transplants

Organ

Centers Ever

Reporting Data

Centers Reporting

Transplants in 1993

Centers Reporting

Transplants between 1/2001

and 6/2002

Heart 330 231 202

Heart-Lung 129 60 41

Lung 183 102 105


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

en

ters

Re

po

rtin

g


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

ente

rs R

epo

rtin

g


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

en

ters

Re

po

rtin

g


APPENDIX


Centers Reporting to the ISHLT Transplant Registry

COUNTRY/CenterTXs Performed in 2000 and Reported to ISHLT

TXs Performed 1/2001-6/2002 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 Klinik fur Chirurgie (Graz) x x

BELGIUM

Erasme Univ. Hospital (Brussels) x x

Univ. Hospital Gasthuisberg (Leuven) x x(Cont’d)





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)





CANADA (cont’d)

St. Paul x x

Vancouver General Hospital x x

The Hospital for Sick Children x x

CHILE

Hospital DIPRECA x x

Clinica Las Condes x

DENMARK

Skejby University Hospital x x

Rigshospitalet, National University Hospital

x x

FINLAND

Helsinki University Central Hospital x x

Children's Hospital, Univ. of Helsinki x x

(Cont’d)





FRANCE

Hopital Cardiolgique (Lille) 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

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

(Cont’d)





GERMANY (cont’d)

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

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(Cont’d)





GERMANY (cont’d)

Medizinische Hochschule Hannover x x

Universitatsklinik Gottingen x x

Klinikum der Rheinisch-Westfalischen Technischen Hochschule Aachen

x x

Fulda Medical Center x x

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(Cont’d)


Centers Reporting to the ISHLT Transplant RegistryCOUNTRY/Center

TXs Performed in 2000 and Reported to ISHLT


GERMANY (cont’d)

Medizinische Einrichtupgen der Universiteat , Nurenberg

x x

Chirurgische Univ. Klinik/Julius Maxmillians Universitaet (Wurzburg)

x

GREECE

Onassis Cardiac Surgery Center x x

IRELAND

Mater Hospital x x

ISRAEL

Sheba Medical Center x x

Hadassah University Hospital x

ITALY

Policlinico S. Orsola - Universita degli Studi

x

(Cont’d)





JAPAN

Tohoku University, IDAC Hospital x x

Osaka University Hospital x x

National Cardiovascular Center x x

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 x

(Cont’d)





SINGAPORE

National Heart Centre x

SLOVENIA

University Medical Center Ljubljana x x

SWEDEN

University Hospital of Lund x x

Sahlgrenska University Hospital x x

SWITZERLAND

Bern University Hospital 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

(Cont’d)





UNITED KINGDOM (cont’d)

The Freeman Hospital x x

Harefield Hosp x x

Wythenshawe Hospital x x

St. George's Hospital x

Queen Elizabeth Hospital x x

Papworth Hospital x x

UNITED STATES

University of Alabama Hospital x x

Baptist Medical Center, Little Rock x x

Arkansas Children’s Hospital x x

The University Hospital of Arkansas x x

University Medical Center, University of AZ

x x

(Cont’d)





UNITED STATES (cont’d)

Children’s Hospital Los Angeles x x

Cedars Sinai Medical Center x x

Loma Linda Univ. Medical Center x x

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

(Cont’d)






USC University Hospital x x

The Children’s Hospital, Denver x x

University Hospital, Denver x x

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, Jacksonville x

Tampa General Hospital x x

Tallahassee Memorial Hospital x x

(Cont’d)






Shands Hospital at University of Florida

x x

Egleston Children’s Hospital x x

Emory University Hospital x x

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 Hospital 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. John’s Hospital x

(Cont’d)






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

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(Cont’d)






Children's Hospital, Boston x x

Massachusetts General Hospital x x

New England Medical Center x x

Brigham and Women’s Hospital x x

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. Mary’s Hospital, Rochester x x

Fairview University Medical Center x x(Cont’d)






Barnes-Jewish Hospital x x

Cardinal Glennon Children’s Hospital x x

St. Louis Children’s Hospital x x

St. Luke’s Hospital of Kansas City x x

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(Cont’d)






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

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

(Cont’d)






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

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(Cont’d)






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

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(Cont’d)






Methodist Specialty & Transplant Hospital

x x

University of Texas Medical Branch x x

The Methodist Hospital, Houston x x

Christus Santa Rosa Medical Center x x

St Paul University Hospital x x

Baylor University Medical Center x x

LDS Hospital x x

University of Utah Medical Center x x

Primary Children’s Medical Center x x

Inova Fairfax Hospital x x

Henrico Doctors Hospital x x

MCV Hospitals x x

(Cont’d)






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

Sacred Heart Medical Center x x

Univ. of Washington Medical Center x x

Children’s Hospital of Wisconsin x x

Froedtert Memorial Lutheran Hospital x x

St Luke’s Medical Center x x

Univ. of Wisconsin Hosp. and Clinics x x

(Cont’d)


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 Linda Butler to obtain an ID and password

3. Registry Report slides will be available for download from the ISHLT web site on July 1.


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

Major Contributors to the ISHLT Transplant Registry

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