2004 ishlt j heart lung transplant 2004; 23: 789-95 the registry of the international society for...

2004ISHLTJ Heart Lung Transplant 2004; 23: 789-95

THE REGISTRY OF THE INTERNATIONAL SOCIETY

FOR HEART AND LUNG TRANSPLANTATION: TWENTIETH ANNUAL

REPORT


Major Contributors to the ISHLT Transplant Registry

Australia and New Zealand Cardiothoracic Organ Transplant Registry (ANZCOTR):Australia New Zealand

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

70 individual centers from Canada, Central/South America, Europe and Asia 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 studies using Registry data

2. Increase the number of non-US reporting centers

3. Develop sources of external funding

4. Optimize the value and image of the Registry to the Society, its members, and the external research community

5. Identify patient-related organizations and pharmaceutical companies and make them aware of the Registry as a resource

6. Restructure the data fields into a tiered system and increase the number of required fields

7. Increase the number of reporting agreements with non-US government regulatory agencies


REGISTRY STEERING COMMITTEE

Marshall Hertz – Medical Director

Elbert Trulock – Associate Dir. for Lung Transpl.

David O. Taylor – Associate Dir. for Heart Transpl.

Mark Boucek – Associate Dir. for Pediatric Transpl.

Mario Deng – MCSD Database Medical Director

Amanda Rowe – ISHLT Executive Director

Berkeley Keck – Assoc. Dir. for Database Management

Leah Edwards – Associate Dir. for Data Analysis


General Registry Statistics


REGISTRY DATABASE:Number of Transplants Reported

ORGAN Transplants Reported Through 6/30/2003

Heart 66,353

Heart-Lung 3,049

Lung 17,128


REGISTRY DATABASE:Number of Centers Reporting Transplants

Organ

Centers Ever

Reporting Data

Centers Reporting

Transplants in 1994

Centers Reporting

Transplants between 1/2002

and 6/2003

Heart 333 252 200

Heart-Lung 132 63 44

Lung 201 119 111


REGISTRY DATABASE:Number of Centers Reporting Heart Transplants

0

50

100

150

200

250

300

1980

1981

1982

1983

1984

1985

1986

1987

1988

1989

1990

1991

1992

1993

1994

1995

1996

1997

1998

1999

2000

2001

2002

Year of Transplant

# o

f C

ente

rs R

epo

rtin

g


REGISTRY DATABASE:Number of Centers Reporting Lung Transplants

0

50

100

150

1987

1988

1989

1990

1991

1992

1993

1994

1995

1996

1997

1998

1999

2000

2001

2002

Year of Transplant

# o

f C

en

ters

Re

po

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

2002

Year of Transplant

# o

f C

ente

rs R

epo

rtin

g


APPENDIX


Centers Reporting to the ISHLT Transplant Registry

COUNTRY/CenterTXs Performed in 2001 and Reported to ISHLT

TXs Performed 1/2002-6/2003 and Reported to ISHLT

ARGENTINA

Fundacion Favaloro x x

AUSTRALIA

St. Vincent x x

The Prince Charles Hospital x x

Royal Children’s Hospital x x

The Alfred Hospital x 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(Cont’d)





BELGIUM (cont’d)

Univ. Hospital Gasthuisberg (Leuven) x x

University Hospital Antwerp 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

Hospital Notre-Dame x x

Quebec Heart Institute - Laval Hospital x x

Ottawa Heart Institute 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 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)


Centers Reporting to the ISHLT Transplant RegistryCOUNTRY/Center

TXs Performed in 2001 and Reported to ISHLT


FRANCE

Hopital Cardiolgique (Lille) x

Hopital La Pitie - Salpetriere x

Hopices Civils Hopital Universitaires de Strasbourg

x

GERMANY

Organisationsbuero des K.F.H. (Homburg/Saar)

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

Kerckoff-Klinik der Max-Planck-Gesellschaft zur Forderung der Wissenschaften e.V. (Bad Nauheim)

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

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

(Cont’d)





GERMANY (cont’d)

Medizinische Einrichtupgen der Universiteat , Nurenberg

x x

GREECE

Onassis Cardiac Surgery Center x x

IRELAND

Mater Hospital x x

ISRAEL

Sheba Medical Center x x

ITALY

Policlinico S. Orsola - Universita degli Studi

x x

Ospedali Riuniti x

(Cont’d)





JAPAN

Tohoku University, IDAC Hospital 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)





SLOVENIA

University Medical Center Ljubljana x x

SWEDEN

University Hospital of Lund x x

Sahlgrenska University Hospital x x

SWITZERLAND

Bern University Hospital x

University Hospital Zurich x

Univ Clinic for CardioThoracic Surgery Basel

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

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

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

Children’s Healthcare of Atlanta 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

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

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 (Mayo Clinic) 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 x

Montefiore Medical Center x x

Mt. Sinai Medical Center x x

New York University Medical Center x

Westchester County Medical Center x x

Cleveland Clinic Foundation x x

Children’s Hospital Dayton 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

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

Texas Children’s Hospital Dallas 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 the Help Desk at [email protected] to obtain an ID and password

3. Registry Report slides will be available for download from the ISHLT web site Summer 2004.


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, the request will be processed and programmed. •Results are usually provided within 2 weeks of being received by analytical staff.

TYPES OF DATA AND ANALYSES:•Datasets (patients and centers will not be identified) •Simple descriptive statistics •Multivariate analyses -- may require more extensive review

2004 ishlt j heart lung transplant 2004; 23: 789-95 the registry of the international society for...

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