Heart, lung, and vascular registries: Evolving goals, successful approaches, and ongoing innovation
2016; Elsevier BV; Volume: 35; Issue: 10 Linguagem: Inglês
10.1016/j.healun.2016.08.021
ISSN1557-3117
AutoresJosef Stehlik, Joseph E. Bavaria, Jeroen J. Bax, Jack L. Cronenwett, Leah B. Edwards, Ronald M. Fairman, Roberto Ferrari, Jeffrey P. Jacobs, Maryl R. Johnson, Larry W. Kraiss, Frederick A. Masoudi, Mandeep R. Mehra, Alec Vahanian, Mary Norine Walsh, Lars H. Lund,
Tópico(s)Healthcare cost, quality, practices
ResumoThe publication of the 33rd annual report of the International Heart and Lung Transplant (ISHLT) Registry coincides with the approval of the 2016 to 2020 ISHLT Strategic Framework (Figure 1). The ISHLT Registries figure prominently in the strategic plan. The question that should be asked is: How are global clinical registries relevant in the era of evidence-based medicine and electronic health records (EHR)? From a historical perspective, observational data have often been the driver of innovation in medicine, starting with case anecdotes, case series, and eventually, with epidemiologic studies that critically examined data collected in larger patient populations. The clinical need to enable analysis of larger sets of observational data acted as a catalyst to the field of medical epidemiology, stimulating novel approaches for the creation of appropriate control groups and mitigation of biases and confounders. The introduction of the randomized controlled clinical trial into clinical investigation provided a powerful tool to control for confounders. This approach to the testing of hypotheses has become a fundamental component of clinical investigation and basis for clinical care. By the 1990s, the strong support of the medical community for the "evidence-based approach" in clinical decision making resulted in a proposed new hierarchy of reliability of the results of medical research, such that the reliability of randomized clinical trial results is considered superior to findings obtained through other approaches.1Evidence-Based Medicine Working GroupEvidence-based medicine. A new approach to teaching the practice of medicine.JAMA. 1992; 268: 2420-2425Crossref PubMed Scopus (3552) Google Scholar In the past 25 years, clinical trials have provided vast new information and greatly influenced clinical care. We have, however, also become aware of the dangers of over-reliance on clinical trial results.2Sheridan D.J. Julian D.G. Achievements and limitations of evidence-based medicine.J Am Coll Cardiol. 2016; 68: 204-213Crossref Scopus (48) Google Scholar Clinical trials often select less generalizable populations monitored for shorter durations, such that real-world application and outcomes can sometimes be treacherous. Adverse effects often require longer real-world observation, frequently through applied registries.3Rossello X. Pocock S.J. Julian D.G. Long-term use of cardiovascular drugs: challenges for research and for patient care.J Am Coll Cardiol. 2015; 66: 1273-1285Abstract Full Text Full Text PDF PubMed Scopus (98) Google Scholar Reporting bias—the preferential publication of results from trials with positive findings—may result in over-estimation of treatment effect. Further, the controlled nature of clinical trials often does not allow for the evaluation of evolving treatment effects in parallel, such that the specific approaches tested in clinical trials may no longer reflect the results that would be expected in contemporary care of an unselected patient population. Finally, clinical trials have historically focused primarily on pharmacotherapy and device treatments but not on many other aspects of medical care that are important, particularly in complex and multidisciplinary fields such as organ transplantation.2Sheridan D.J. Julian D.G. Achievements and limitations of evidence-based medicine.J Am Coll Cardiol. 2016; 68: 204-213Crossref Scopus (48) Google Scholar More often, approval processes for drugs and devices now require the development of real-world registries to evaluate poorly studied effects in the main clinical trial. With the increasing cost and complexity of medical care, attention has also focused on aspects of care, such as appropriate implementation of therapy, quality of care delivered, or equity in access to care, for which registry data are especially suitable. Professional societies have played a critical role in providing a home, a vision, and a long-term sustainability for clinical care registries. The key role of these registries has traditionally been to provide information on clinical approaches and treatments where reliable clinical information was difficult to obtain because of the rarity of the disease or a treatment procedure or as a result of the limited length of follow-up available through other means of clinical investigation.4Lund L.H. Edwards L.B. Kucheryavaya A.Y. Benden C. Dipchand A.I. Goldfarb S. et al.The registry of the International Society for Heart and Lung Transplantation: thirty-second official adult heart transplantation report—2015; focus theme: early graft failure.J Heart Lung Transplant. 2015; 34: 1244-1254Abstract Full Text Full Text PDF PubMed Scopus (359) Google Scholar, 5Ansari D. Lund L.H. Stehlik J. Andersson B. Höglund P. Edwards L. et al.Induction with anti-thymocyte globulin in heart transplantation is associated with better long-term survival compared with basiliximab.J Heart Lung Transplant. 2015; 34: 1283-1291Abstract Full Text Full Text PDF Scopus (46) Google Scholar To assess how the ISHLT Registry has evolved over the years, we took an opportunity to cast it in relation to select other prominent registries in the heart, lung, and vascular fields: the Vascular Quality Initiative (VQI) of the Society for Vascular Surgery (SVS),6Cronenwett J.L. Kraiss L.W. Cambria R. The Society for Vascular Surgery Vascular Quality Initiative.J Vasc Surg. 2012; 55: 1529-1537Abstract Full Text Full Text PDF PubMed Scopus (261) Google Scholar the Euro Observation Research Programme (EORP) operated by the European Society of Cardiology (ESC),7European Society of Cardiology. EURObservational Research Programme. Available at: http://www.escardio.org/Research/Registries-&-surveys/EURObservational-Research-Programme. Accessed September 9, 2016.Google Scholar The Society of Thoracic Surgeons (STS) National Database,8Jacobs J.P. Shahian D.M. Prager R.L. Edwards F.H. McDonald D. Han J.M. et al.Introduction to the STS National Database Series: outcomes analysis, quality improvement, and patient safety.Ann Thorac Surg. 2015; 100: 1992-2000Abstract Full Text Full Text PDF PubMed Scopus (65) Google Scholar and the National Cardiovascular Data Registry (NCDR) sponsored by the American College of Cardiology.9Masoudi F.A. Ponirakis A. Yeh R.W. Maddox T.M. Beachy J. Casale P.N. et al.Cardiovascular care facts: a report from the national cardiovascular data registry: 2011.J Am Coll Cardiol. 2013; 62: 1931-1947Abstract Full Text Full Text PDF PubMed Scopus (121) Google Scholar A review of the structure and the aims of each of the registries and the specific approaches used to achieve its goals are presented in the Supplementary data (available on the jhltonline.org Web site.). This overview shows how the structure, goals, and scope of clinical registries have evolved during the last decade to meet new needs. We identified the following common registry functionalities that will assuredly strengthen their viability:1.Increased focus on quality improvement. Registries are uniquely positioned for benchmarking of treatment processes and outcomes. Infrastructure that allows this work to be conducted and the flexibly to respond to quality initiative needs allows registries to be strong partners for hospitals and regulatory agencies. Timely feedback to the providers can in turn affect change (quality improvement), which is again quantified through the registry.10Bhatt D.L. Drozda Jr, J.P. Shahian D.M. Chan P.S. Fonarow G.C. Heidenreich P.A. et al.Writing Committee MembersACC/AHA/STS statement on the future of registries and the performance measurement enterprise: a report of the American College of Cardiology/American Heart Association Task Force on Performance Measures and The Society of Thoracic Surgeons.Circ Cardiovasc Qual Outcomes. 2015; 8: 634-648Google Scholar2.Expansion of the registry to accommodate post-marketing studies of new devices and drugs. Such studies can complement clinical trials that established the initial utility of the new therapies. Registries provide information on using approved treatments in the unselected real-world populations and possibly, on their broader clinical use.3.Assessment of cost effectiveness of treatments and care processes. Registries may be able to increase their effect in this area through easier access to data, such as direct extraction of information from the EHR and integration of billing data and insurance claim data. If this can be accomplished, registries could play a more prominent role in serving as an efficient and inexpensive platform for pragmatic comparative effectiveness trials. Certainly, registries also continue to face challenges. Compared with the meticulously controlled environment of a clinical trial, missing or inaccurate data are more likely to be encountered in registry repositories. Extraction of data from the EHR may not fully mitigate this problem. Although extraction eliminates the need for duplicative data collection by an abstractor, the consistency and completeness of data may not be uniform among hospital programs, reflecting the lack of interoperability and standardization among existing EHRs. To truly reflect the whole spectrum of clinical practice, it is important to ensure that registry participation is as complete as possible for the condition or process being studied. This is easier to accomplish in circumstances where data collection is mandated as part of a regulatory requirement (e.g., data reporting in solid organ transplant in the United States). In the absence of such a mandate, it is important to find other strong incentives, such as sufficient and reliable funding, that will support continued engagement of registry participants. Most registries are currently supported by professional society subsidies and through participation fees from hospitals or physician groups. Some countries have implemented health care payer funding for qualified registries that support quality improvement, and wider adoption of this model could prove beneficial. Care should also be taken to complement traditional outcomes of mortality and morbidity with outcomes that are viewed as important by patients, such as patient experience with the disease and with the treatment process, health-related quality of life, and values-based outcomes. Engaging patients in defining these outcomes is critically important.11Workman T.A. Engaging patients in information sharing and data collection: the role of patient-powered registries and research networks. AHRQ Community Forum White Paper. AHRQ Publication No. 13-EHC124-EF. Agency for Healthcare Research and Quality, Rockville, MD2013Google Scholar We conclude that registries represent an important facet of medical and scientific knowledge advancement and health care delivery. Current registry initiatives benefit from diverse data sources and make use of the collected data in innovative ways (Figure 2). The representative registries discussed in this report strive to contribute to timely translation of evidence to practice, serve as a learning network for its participants, take advantage of evolving technology, and respond to the changing needs. Flexibility that allows for change and for adoption of new functionalities seems to be the approach that will ensure that registries continue to provide extraordinary value to clinicians, hospitals, industry, health care payers, and, most importantly, to our patients. The strategic goal for the ISHLT Registry is to embrace evolution and "modernization" to be able to focus more closely on quality, appropriateness, and clinical usefulness. The authors acknowledge the participating centers and data exchange organizations in close to 40 countries around the world for their participation in the ISHLT Thoracic Transplant Registry (Appendix) and acknowledge the assistance of Dr Carlos Rodriguez Correa in the preparation of this manuscript.AppendixList of Thoracic Transplant Centers Reporting Data to the International Society for Heart and Lung Transplantation Transplant Registry for Transplants Performed Between January 1, 2014 and June 30, 2015Country (ISO Code)CenterArgentinaaData provided via the Instituto Nacional Central Único Coordinador de Ablación e Implante (INCUCAI) (ARG)Fundacion FavaloroHarefield S.A. - Hospital Italiano de MendozaCentro De Trasplante Cardiaco Hospital Privado CordobaHospital Italiano de Buenos AiresHospital Universitario AustralHospital El CruceHospital Español de MendozaCentro de Trasplante Cardiaco del Sanatorio AllendeCentro de Trasplante Cardiaco Hospital Italiano CordobaHospital AlemanHospital CordobaHospital de Alta Complejidad Pte Juan Domingo PeronHospital de Pediatria Juan P GarrahanHospital General de Agudos Dr Cosme ArgerichInstituto Cardiovascular de Buenos AiresSanatorio de la Trinidad MitreSanatorio ParqueAustraliabData provided via Australia and New Zealand Cardiothoracic Transplant Registry (ANZCOTR) (AUS)St. VincentRoyal ChildrenThe Prince Charles HospitalThe Alfred HospitalRoyal Perth HospitalAustriacData provided via Eurotransplant (ET) (AUT)Allgemeines Krankenhaus WienUniversitätsklinik InnsbruckLandeskrankenhaus GrazBelgiumcData provided via Eurotransplant (ET) (BEL)Hôpital Erasme BruxellesUniversitair Ziekenhuis AntwerpenOnze Lieve Vrouw Ziekenhuis AalstUniversitair Ziekenhuis GentCentre Hospitalier Universitaire LiègeCliniques Universitaires, Université Catholique de LouvainUZ Gasthuisberg LeuvenBrazil (BRA)Heart Institute-Univ. Sao Paulo Hospital das ClinicasHospital de MessejanaReal Hospital Portugues de Beneficiencia Em PernambucoInstituto de Medicina IntegralProcardiaco HospitalCanada (CAN)Royal Victoria HospitalThe Toronto General HospitalHospital Sainte-JustineInstitut Universitaire De Cardiologie Et De Pneumologie de QuébecUniversity of Alberta Hospitals/Walter C. Mackenzie Health SciencesSt. Paul׳s HospitaldData provided via British Columbia Transplant AgencyVancouver General HospitaldData provided via British Columbia Transplant AgencyThe Hospital For Sick ChildrenColombia (COL)Clinica CardiovascularFundacion Cardioinfantil - Instituto de CardiologiaFundacion Cardiovascular de ColombiaCroatiacData provided via Eurotransplant (ET) (HRV)University Clinical Hospital ZagrebUniversity Hospital DubravaThe Czech Republic (CZE)University Hospital MotolDenmarkeData provided via Scandiatransplant (DNK)Skejby University HospitalRigshospitalet, National University HospitalEstonia (EST)Tartu University HospitalFinlandeData provided via Scandiatransplant (FIN)Helsinki University Central HospitalChildren׳s Hospital, University of HelsinkiFrancefData provided via L'Agence de la Biomédicine (FRA)Marseille Sainte Marguerite (APM) (A) - Chirurgie ThoraciqueMarseille Timone adultes (APM) (A) - Chirurgie CardiaqueMarseille Timone enfants (APM) (A+P) - Chirurgie Cardio-VasculaireCaen (A) - Chirurgie CardiaqueDijon (A) - Chirurgie CardiaqueToulouse (A) - Chirurgie ThoraciqueToulouse (A) - Chirurgie Cardio-VasculaireBordeaux (A+P) - Unite de Transplantation CardiaqueBordeaux (A+P) - Chirurgie ThoraciqueMontpellier (A) - Unite de Transpl. Cardio-ThoraciqueRennes (A) - Centre Cardio-PneumologiqueTours (A+P) - Chirurgie CardiaqueGrenoble (A) - Chirurgie CardiaqueGrenoble (A) - PneumologieNantes (A+P) - Chirurgie Cardio-VasculaireNancy (A+P) - Chirurgie Cardio-PulmonaireLille (A+P) - Chirurgie Cardio-VasculaireClermont-Ferrand (A) - Chirurgie CardiaqueStrasbourg (A) - Chirurgie ThoraciqueStrasbourg (A) - Chirurgie Cardio-PulmonaireLyon (A+P) - POLE DE Transplantation PulmonaireLyon I (HCL) (A+P) - Pole de Transplantation CardiaqueLyon II (HCL) (A) - Pole de Transplantation CardiaqueParis Pitié-Salpêtrière (AP-HP) (A+P) - Chirurgie Cardio-VasculaireParis Necker Enfants Malades (AP-HP) (A+P) - Cardiologie PediatriqueClichy Beaujon (AP-HP) (A) - Pneumologie B et Transplantation PulmonaireParis Bichat (AP-HP) (A) - Chirurgie Cardio-VasculaireParis Georges Pompidou (AP-HP) (A) - Transplantation CardiaqueParis Georges Pompidou (AP-HP) (A+P) – Transpl. Pulm. et Cardio-Pulm.Rouen (A+P) - Chir. Thoracique et Cardio-VasculaireLimoges (A) - Chirurgie CardiaqueSuresnes Foch (A) - Chirurgie ThoraciqueLe Plessis-Robinson Marie-Lannelongue (A+P) - Chirurgie CardiaqueLe Plessis-Robinson Marie-Lannelongue (A+P) - Chirurgie Thoracique Cardio-VasculaireCréteil Henri Mondor (AP-HP) (A) - Chirurgie Cardio-VasculaireGermanycData provided via Eurotransplant (ET) (DEU)Universität des Saarlandes Homburg/SaarDeutsches Herzzentrum BerlinUniversitätsklinik KölnUniversität Leipzig – HerzzentrumKerckhoff Klinik, Bad NauheimKlinikum der Universität RegensburgHerzzentrum Nordrhein-Westfalen Bad OeynhausenUniversitätsklinikum EssenJohannes Gutenberg Universität MainzHeinrich-Heine-Universität DüsseldorfUniversitätsklinikum MünsterRuprecht-Karls-Universität HeidelbergMedizinische Hochschule HannoverUniversitätsklinikum GöttingenUniversitätsklinikum AachenKlinikum der Justus-Liebig-Universität GiessenUniversitätsklinikum Schleswig-Holstein KielJohann Wolfgang Goethe Universität Frankfurt/MainFriedrich Schiller Universität JenaFriedrich Alexander Universität ErlangenUniversitätsklinikum WürzburgLudwig Maximilians Universität MünchenUniversitätsklinikum HamburgKlinikum der Albert-Ludwigs-Universität Freiburg im BreisgauIndia (IND)Fortis Malar HospitalIran (IRN)Cardiac Surgery and Transplantation Research CenterMasih Daneshvari HospitalIsrael (ISR)Rabin Medical Center (Belinson Campus)Sheba Medical CenterHadassah University HospitalItaly (ITA)Policlinico S. Orsola - Universita degli StudiJapan (JPN)Tohoku University HospitalNetherlandscData provided via Eurotransplant (ET) (NLD)Universitair Medisch Centrum UtrechtErasmus Medisch Centrum RotterdamUniversitair Medisch Centrum GroningenNew Zealand (NZL)Auckland City HospitalNorwaydData provided via British Columbia Transplant Agency (NOR)Rikshospitalet - National Hospital of NorwayPoland (POL)Regional Pulmonary HospitalRussia (RUS)Federal V. Shumakov Research Centre of Transplantology & Artificial OrgansRepublic of Korea (KOR)Seoul National University HospitalSeverance HospitalSaudi Arabia (SAU)King Faisal Specialist Hospital and Research CenterSloveniacData provided via Eurotransplant (ET) (SVN)University Medical Center LjubljanaSouth Africa (ZAF)Milpark HospitalSpain (ESP)Complejo Hospitalario Universitario Juan CanalejogLung data provided via Organización Nacional de Trasplantes (ONT), hHeart data provided directly to ISHLT RegistryHospital Universitario Marques De ValdecillagLung data provided via Organización Nacional de Trasplantes (ONT), iHeart data provided via Registro Español de Trasplante CardíacoHospital de Bellvitge. BarcelonaiHeart data provided via Registro Español de Trasplante CardíacoHospital Virgen del Rocio. SevillaiHeart data provided via Registro Español de Trasplante CardíacoHospital Santa Creu I Sant Pau. BarcelonaiHeart data provided via Registro Español de Trasplante CardíacoHospital Universitario 12 de OctubregLung data provided via Organización Nacional de Trasplantes (ONT), iHeart data provided via Registro Español de Trasplante CardíacoHospital Universitario Reina SofiagLung data provided via Organización Nacional de Trasplantes (ONT), iHeart data provided via Registro Español de Trasplante CardíacoHospital Gregorio Marañón. MadridiHeart data provided via Registro Español de Trasplante CardíacoHospital Universitario Puerta de HierrogLung data provided via Organización Nacional de Trasplantes (ONT)Hospital Universitario La FegLung data provided via Organización Nacional de Trasplantes (ONT), iHeart data provided via Registro Español de Trasplante CardíacoHospital Clinic I Provincial. BarcelonaiHeart data provided via Registro Español de Trasplante CardíacoHospital Universitario Vall D'hebrongLung data provided via Organización Nacional de Trasplantes (ONT), iHeart data provided via Registro Español de Trasplante CardíacoHospital Central De AsturiashHeart data provided directly to ISHLT RegistryHospital La Paz InfantiliHeart data provided via Registro Español de Trasplante CardíacoHospital Virgen de la Arrixaca. MurciaiHeart data provided via Registro Español de Trasplante CardíacoHospital Miguel Servet. ZaragozaiHeart data provided via Registro Español de Trasplante CardíacoHospital Clínico. ValladolidiHeart data provided via Registro Español de Trasplante CardíacoSwedeneData provided via Scandiatransplant (SWE)Sahlgrenska University HospitalUniversity Hospital of LundSwitzerland (CHE)University Hospital ZurichTaiwan (TWN)Cheng-Hsin General HosptialTurkey (TUR)Heart Center, Ankara UniversityHospital of Akdeniz UniversityUnited KingdomjData provided via United Kingdom Transplant Support Service Authority (UKTSSA) (GBR)Great Ormond Street Hospital for ChildrenUniversity of Glasgow/Glasgow Royal InfirmaryThe Freeman HospitalHarefield HospitalWythenshawe HospitalQueen Elizabeth HospitalPapworth HospitalUnited StateskData provided via United Network for Organ Sharing (UNOS) (USA)Children's of Alabama, Birmingham, ALUniversity of Alabama Hospital, Birmingham, ALBaptist Medical Center, Little Rock, ARArkansas Children's Hospital, Little Rock, ARPhoenix Children's Hospital, Phoenix, AZMayo Clinic Hospital, Phoenix, AZSt. Joseph's Hospital and Medical Center, Phoenix, AZBanner University Medical Center, Tucson, AZRady Children's Hospital & Health Center, San Diego, CAChildren's Hospital Los Angeles, Los Angeles, CACedars-Sinai Medical Center, Los Angeles, CALoma Linda University Medical Center, Loma Linda, CALucile Salter Packard Children's Hospital, Palo Alto, CACalifornia Pacific Medical Center, San Francisco, CAUCSD Medical Center, San Diego, CAUCSF Medical Center, San Francisco, CASutter Memorial Hospital, Sacramento, CASharp Memorial Hospital, San Diego, CAStanford University Medical Center, Stanford, CAUCLA Medical Center, Los Angeles, CAKeck Hospital of USC, Los Angeles, CAChildren's Hospital Colorado, Aurora, COUniversity of Colorado Hospital/HSC, Aurora, COHartford Hospital, Hartford, CTYale New Haven Hospital, New Haven, CTChildren's National Medical Center, Washington, DCWashington Hospital Center, Washington, DCAlfred I duPont Hospital for Children, Wilmington, DEAll Children's Hospital, St. Petersburg, FLCleveland Clinic Florida Weston, Weston, FLFlorida Hospital Medical Center, Orlando, FLMemorial Regional/Joe DiMaggio Children's Hospital, Hollywood, FLJackson Memorial Hospital, Miami, FLMemorial Regional Hospital, Hollywood, FLMayo Clinic Florida, Jacksonville, FLTampa General Hospital, Tampa, FLUF Health Shands Hospital, Gainesville, FLChildren's Healthcare of Atlanta, Atlanta, GAEmory University Hospital, Atlanta, GAPiedmont Hospital, Atlanta, GAUniversity of Iowa Hospital and Clinics, Iowa City, IAAdvocate Christ Medical Center, Oak Lawn, ILAnn and Robert H. Lurie Children's Hospital, Chicago, ILLoyola University Medical Center, Maywood, ILNorthwestern Memorial Hospital, Chicago, ILRush University Medical Center, Chicago, ILUniversity of Chicago Medical Center, Chicago, ILIndiana University Health, Indianapolis, INLutheran Hospital of Ft Wayne, Ft Wayne, INSt. Vincent Hospital and Health Care Center, Indianapolis, INJewish Hospital, Louisville, KYKosair Children's Hospital, Louisville, KYUniversity of Kentucky Medical Center, Lexington, KYOchsner Foundation Hospital, New Orleans, LABoston Children's Hospital, Boston, MAMassachusetts General Hospital, Boston, MATufts Medical Center, Boston, MABrigham and Women's Hospital, Boston, MAJohns Hopkins Hospital, Baltimore, MDUniversity of Maryland Medical System, Baltimore, MDChildren's Hospital of Michigan, Detroit, MIHenry Ford Hospital, Detroit, MISpectrum Health, Grand Rapids, MIUniversity of Michigan Medical Center, Ann Arbor, MIUniversity of Minnesota Amplatz Children's Hospital, Minneapolis, MNAbbott Northwestern Hospital, Minneapolis, MNSt. Mary's Hospital (Mayo Clinic), Rochester, MNUniversity of Minnesota Medical Center-Fairview, Minneapolis, MNBarnes-Jewish Hospital, St. Louis, MOCardinal Glennon Children's Hospital, St. Louis, MOSt. Louis Children's Hospital, St. Louis, MOChildren's Mercy Hospital, Kansas City, MOSt. Luke's Hospital of Kansas City, Kansas City, MOUniversity of Mississippi Medical Center, Jackson, MSWake Forest Baptist Medical Center, Winston Salem, NCCarolinas Medical Center, Charlotte, NCDuke University Hospital, Durham, NCUNC Hospitals, Chapel Hill, NCChildren's Hospital and Medical Center, Omaha, NEThe Nebraska Medical Center, Omaha, NENewark Beth Israel Medical Center, Newark, NJRobert Wood Johnson University Hospital, New Brunswick, NJNew York-Presbyterian/Columbia, New York, NYStrong Memorial Hospital, Rochester, NYMontefiore Medical Center, Bronx, NYMount Sinai Medical Center, New York, NYWestchester Medical Center, Valhalla, NYCleveland Clinic Foundation, Cleveland, OHNationwide Children's Hospital, Columbus, OHChildren's Hospital Medical Center, Cincinnati, OHOhio State University Medical Center, Columbus, OHUniversity Hospital of Cleveland, Cleveland, OHIntegris Baptist Medical Center, Oklahoma City, OKOregon Health and Science University, Portland, ORAllegheny General Hospital, Pittsburgh, PAChildren's Hospital of Pittsburgh of UPMC, Pittsburgh, PAChildren's Hospital of Philadelphia, Philadelphia, PAPenn State Milton S Hershey Medical Center, Hershey, PAUniversity of Pittsburgh Medical Center, Pittsburgh, PAThomas Jefferson University Hospital, Philadelphia, PATemple University Hospital, Philadelphia, PAThe Hospital of the University of PA, Philadelphia, PACardiovascular Center of PR, San Juan, PRMedical University of SC, Charleston, SCBaptist Memorial Hospital, Memphis, TNVanderbilt University Medical Center, Nashville, TNUniversity Hospital, San Antonio, TXChildren's Medical Center of Dallas, Dallas, TXSeton Medical Center Austin, Austin, TXMedical City Dallas Hospital, Dallas, TXMemorial Hermann Hospital, Houston, TXCHI St. Luke's Health Baylor College, Houston, TXMethodist Specialty and Transplant Hospital, San Antonio, TXUniversity of Texas Medical Branch, Galveston, TXThe Methodist Hospital, Houston, TXUT Southwestern Medical Center, Dallas, TXScott and White Memorial Hospital, Temple, TXTexas Children's Hospital, Houston, TXBaylor University Medical Center, Dallas, TXIntermountain Medical Center, Murray, UTUniversity of Utah Medical Center, Salt Lake City, UTPrimary Children's Medical Center, Salt Lake City, UTInova Fairfax Hospital, Falls Church, VAMCV Hospitals, Richmond, VAMcGuire VA Medical Center, Richmond, VASentara Norfolk General Hospital, Norfolk, VAUniversity of Virginia HSC, Charlottesville, VASeattle Children's Hospital, Seattle, WASacred Heart Medical Center, Spokane, WAUniversity of Washington Medical Center, Seattle, WAChildren's Hospital of Wisconsin, Milwaukee, WIFroedtert Memorial Lutheran Hospital, Milwaukee, WIAurora St. Luke's Medical Center, Milwaukee, WIUniversity of Wisconsin Hospital and Clinics, Madison, WIa Data provided via the Instituto Nacional Central Único Coordinador de Ablación e Implante (INCUCAI)b Data provided via Australia and New Zealand Cardiothoracic Transplant Registry (ANZCOTR)c Data provided via Eurotransplant (ET)d Data provided via British Columbia Transplant Agencye Data provided via Scandiatransplantf Data provided via L'Agence de la Biomédicineg Lung data provided via Organización Nacional de Trasplantes (ONT)h Heart data provided directly to ISHLT Registryi Heart data provided via Registro Español de Trasplante Cardíacoj Data provided via United Kingdom Transplant Support Service Authority (UKTSSA)k Data provided via United Network for Organ Sharing (UNOS) Open table in a new tab All relevant disclosures for the authors are on file with the ISHLT and can be made available for review by contacting the Executive Director of the ISHLT. 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