major contributors to the ishlt transplant registry

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 NetherlandsBelgium SloveniaGermanyUnited Kingdom Transplant Services Authority (UKTSSA):United Kingdom IrelandUnited Network for Organ Sharing (UNOS):United States75 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 data2. Increase the number of non-US reporting centers3. Optimize the data quality and integrity4. Improve the process of receiving, processing and

fulfilling data and analysis requests5. Develop sources of external funding6. Develop a formal publication policy regarding the use of

Registry data7. Increase the number of centers reporting data online8. 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 DirectorElbert Trulock – Associate Director for Lung TransplantationDavid O. Taylor – Associate Director for Heart TransplantationMark Boucek – Associate Director for Pediatric TransplantationPaul Mohacsi – Associate Director for Non-US CentersAmanda Rowe – ISHLT Executive DirectorBerkeley Keck – Associate Director for Database ManagementLeah 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

# of

Cen

ters

Rep

ortin

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

# of

Cen

ters

Rep

ortin

g


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

# of

Cen

ters

Rep

ortin

g


2002ISHLT

APPENDIX

2002ISHLT

Centers Reporting to the ISHLT Transplant RegistryCOUNTRY/Center Transplants Performed in

2000 and Reported to ISHLTTransplants Performed in

2001 and Reported to ISHLT

ARGENTINAFundacion Favaloro x xAUSTRALIASt. Vincent x xThe Prince Charles Hospital x xThe Alfred Hospital xRoyal Perth Hospital x xAUSTRIAUniversity of Vienna x xInnsbruck University Hospital x xUniversity Klin fur Chir (Graz) x xBELGIUMErasme Univ. Hospital (Brussels) x xUniv. Hospital Gasthuisberg (Leuven) x x

(Cont’d)

2002ISHLT




BELGIUM (cont’d)University Hospital Antwerp x xOLV Hospital (Aalst) x xUniversity Hospital Gent x xCentre Hospitalier Universitaire de Liege, CHU Sart-Tilman x x

CANADARoyal Victoria Hospital x xMontreal Heart Institute x xThe Toronto General Hospital x xQuebec Heart Institute - Laval Hospital x x

Ottawa Heart Institute x xUniv. of Alberta Hospitals/ Walter C. Mackenzie Health Sciences x x

(Cont’d)

2002ISHLT




CANADA (cont’d)St. Paul x xVancouver General Hospital x xThe Hospital for Sick Children x xCHILEHospital DIPRECA xClinica Las Condes xFRANCEHopital Cardiolgique x xHopital La Pitie x xGERMANYOrganisationsbuero des K.F.H. (Homburg/Saar)

x x

Martin-Luther Universitaet Halle x xTechnischen Universitaet Dresden x x

(Cont’d)

2002ISHLT




GERMANY (cont’d)German Heart Institute (Berlin) x xUniversitat Hamburg x xUniversitaetsklinik (Koeln) x xUniversity of Leipzig - Heart Center x xKerckoff-Klinik der Max-Planck-Gesellschaft zur Forderung der Wissenschaften e.V. (Bad Nauheim)

x x

Klinikum der Universitaet (Heidelberg) x xHerz-und Diabetesentrum Nordrhein -Westfalen (Bad Oeynhausen) x x

Chirurgische Universitaetsklinik/ Univ. Rostock (Freiburg Im Breisgau) x x

Essen University Medical School x xI. Med. Klinik J. Gutenberg (Mainz) x x

(Cont’d)

2002ISHLT




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 xUniversitatsklinik Gottingen x xKlinikum der Rheinisch-Westfalischen Technischen Hochschule Aachen

x x

Fulda Medical Center x x

(Cont’d)

2002ISHLT




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 xFriedrich Schiller Universitaet (Jena) x xKlinikum Karlsburg xKlinik fuer Herzchirurgie Karlsruhe x xMedizinische Einrichtupgen der Universiteat , Nurenberg x x

Chirurgische Univ. Klinik/Julius Maxmillians Universitaet (Wurzburg) x

GREECEOnassis Cardiac Surgery Center x x

(Cont’d)

2002ISHLT

Centers Reporting to the ISHLT Transplant Registry

COUNTRY/Center Transplants Performed in 2000 and Reported to ISHLT

Transplants Performed in 2001 and Reported to ISHLT

IRELANDMater Hospital x xISRAELSheba Medical Center x xHadassah University Hospital xITALYPoliclinico S. Orsola - Universita degli Studi x

JAPANTohoku University, IDAC Hospital xOsaka University Hospital x x

(Cont’d)

2002ISHLT




NETHERLANDSHeart-Lung Institute, University Hospital Utrecht x x

Thoraxcenter - University Hospital Rotterdam x x

University Hospital Groningen x xNEW ZEALANDGreen Lane Hospital x xNORWAYRikshospitalet - National Hospital of Norway x

SINGAPORENational Heart Centre xSLOVENIAUniversity Medical Center Ljubljana x x

(Cont’d)

2002ISHLT




SWEDENUniversity Hospital of Lund x xSWITZERLANDBern University Hospital x xUNITED STATESUniversity of Alabama Hospital x xBaptist Medical Center, x xArkansas Children’s Hospital x xThe University Hospital of Arkansas x xUniversity Medical Center, University of AZ x x

Children’s Hospital Los Angeles x xCedars Sinai Medical Center x xLoma Linda Univ. Medical Center x x

(Cont’d)

2002ISHLT




UNITED STATES (cont’d)California Pacific Medical Center x xUCSD Medical Center x xUniversity of CA San Francisco Medical Center x x

Sutter Memorial Hospital x xSharp Memorial Hospital x xUC Davis Medical Center xStanford University Medical Center x xSt Vincent Medical Center x xUCLA Medical Center x xUSC University Hospital x xThe Children’s Hospital, Denver x xUniversity Hospital, Denver x x

(Cont’d)

2002ISHLT




UNITED STATES (cont’d)Hartford Hospital x xYale New Haven Hospital x xChildren’s National Medical Center xWashington Hospital Center x xAll Children’s Hospital x xJackson Memorial Hospital x xSt Luke’s Hospital xTampa General Hospital x xTallahassee Memorial Hospital x xShands Hospital at University of Florida x x

Egleston Children’s Hospital x xEmory University Hospital x x

(Cont’d)

2002ISHLT




UNITED STATES (cont’d)St Joseph Hospital of Atlanta x xSt Francis Medical Center, Honolulu x xUniv. of Iowa Hospital and Clinics x xChildren’s Memorial Hosp x xLoyola University Medical Center x xNorthwestern Memorial Hospital xRush Pres St Luke’s Medical Center x xOSF St Francis Medical Center x xSt. Johns Hospital xUniv. of Chicago Medical Center x xUniversity of Illinois Hospital x xClarian Health-Methodist/IU/Riley x xIndiana University Medical Center x x

(Cont’d)

2002ISHLT




UNITED STATES (cont’d)Lutheran Hospital of Ft Wayne x xSt Vincent Hosp. and Health Care Ctr x xVia Christi Regional Medical Center x xJewish Hospital x xKosair Children’s Hospital xUniv. of Kentucky Medical Center x xOchsner Foundation Hospital x xTulane University Medical Center x xWillis Knighton Medical Center x xChildren's Hospital, Boston x xMassachusetts General Hospital x xNew England Medical Center x xBrigham and Women’s Hospital x x

(Cont’d)

2002ISHLT




UNITED STATES (cont’d)UMass Memorial Medical Center xJohns Hopkins Hospital x xUniv. of Maryland Medical System x xChildren’s Hospital of Michigan x xHenry Ford Hospital x xUniv. of Michigan Medical Center x xAbbott Northwestern Hospital x xSt Marys Hospital, Rochester x xFairview University Medical Center x xBarnes-Jewish Hospital x xCardinal Glennon Children’s Hospital x xSt Louis Children’s Hospital x xSt Lukes Hospital of Kansas City x x

(Cont’d)

2002ISHLT




UNITED STATES (cont’d)St Louis University Hospital x xUniv. of Missouri Hospital and Clinic x xUniversity of MS Medical Center x xNC Baptist Hospital x xCarolinas Medical Center x xDuke University Medical Center x xUNC Hospitals x xBryan LGH Medical Center East x xNewark Beth Israel Medical Center x xRobert Wood Johnson Univ. Hosp x xPresbyterian Hospital, Albuquerque x xAlbany Medical Center Hospital x xThe Presbyterian Hospital in NY City x x

(Cont’d)

2002ISHLT




UNITED STATES (cont’d)Strong Memorial Hospital xMontefiore Medical Center xMt Sinai Medical Center x xNew York University Medical Center xWestchester County Medical Center xCleveland Clinic Foundation x xChildren's Hospital Medical Center, Cincinnati x x

Medical College Hospital, Toledo x xOhio State University Hospital x xUniv. of Cincinnati Medical Center x xUniversity Hospital of Cleveland x xIntegris Baptist Medical Center x x

(Cont’d)

2002ISHLT




UNITED STATES (cont’d)St. Francis Hospital, Tulsa x xProvidence Portland Medical Center x xOregon Health Sciences Univ. Hosp x xAllegheny General Hospital x xChildren’s Hospital of Pittsburgh x xChildren’s Hospital of Philadelphia x xPenn State Milton S Hershey Med Ctr x xHahnemann University Hospital Tenet x xUniv of Pittsburgh Medical Center x xTemple University Hospital x xThe Hospital of the University of PA x xCardiovascular Center of PR x xMedical University of SC x x

(Cont’d)

2002ISHLT




UNITED STATES (cont’d)Baptist Memorial Hosp, Memphis x xSt Thomas Hospital x xVanderbilt University Medical Center x xBrooke Army Medical Center x xUniversity Hospital, San Antonio x xChildren’s Medical Center of Dallas x xSeton Medical Center x xColumbia Hosp at Medical City Dallas x xSt Luke’s Episcopal Hospital x xMethodist Specialty & Transplant Hosp x x

University of Texas Medical Branch x xThe Methodist Hospital, Houston x x

(Cont’d)

2002ISHLT




UNITED STATES (cont’d)Christus Santa Rosa Medical Center x xSt Paul University Hospital x xBaylor University Medical Center x xLDS Hosp x xUniversity of Utah Medical Center x xPrimary Children’s Medical Center x xInova Fairfax Hosp x xHenrico Doctors Hosp x xMCV Hospitals x xMcGuire VA Medical Center x xSentara Norfolk General Hospital x xUniversity of Virginia HSC x xChildren’s Hosp Medical Ctr, Seattle x x

(Cont’d)

2002ISHLT




UNITED STATES (cont’d)Sacred Heart Medical Center x xUniv. of Washington Medical Center x xChildren’s Hospital of Wisconsin x xFroedtert Memorial Lutheran Hosp x xSt Luke’s Medical Center x xUniv. of Wisconsin Hosp. and Clinics x xUNITED KINGDOMGreat Ormand Street Hospital for Children x x

University of Glasgow/Glasgow Royal Infirmary x x

Northern General Hospital x xThe Freeman Hospital x x

(Cont’d)

2002ISHLT




UNITED KINGDOM (cont’d)Harefield Hosp x xWythenshawe Hospital x xSt. George's Hospital xQueen Elizabeth Hospital x xPapworth 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

major contributors to the ishlt transplant registry

Documents