Patients with transthyretin amyloidosis enrolled in THAOS between 2018 and 2021 continue to experience substantial diagnostic delay

Author:

Coelho Teresa1,Dispenzieri Angela2ORCID,Grogan Martha3,Conceição Isabel4ORCID,Waddington-Cruz Márcia5,Kristen Arnt V.6,Wixner Jonas7,Diemberger Igor89,Gonzalez-Moreno Juan10,Maurer Mathew S.11,Planté-Bordeneuve Violaine12,Garcia-Pavia Pablo1314,Tournev Ivailo1516,Gonzalez-Costello Jose17,Cariou Eve18,González-Duarte Alejandra1920,Glass Oliver21,Chapman Doug21,Amass Leslie21,Hüsing-Kabar Anna22,Drachman Brian23,Adrian Barroso Fabio24,Ueda Mitsuharu25,Sekijima Yoshiki26,Mazzeo Anna27,Gentile Luca27,Jeon Eun-Seok28,Slosky David29,Luigetti Marco30,Hanna Mazen31,Freimer Miriam32,Muñoz-Beamud Francisco33,Adams David34,Mølgaard Henning35,Press Rayomand36,Nienhuis Hans37,Cirami Calogero Lino38,Emdin Michele39,Miller Edward40,Campistol Plana Josep Maria41,Inamo Jocelyn42,Quan Dianna43,Hummel Scott44,Dori Amir45,Witteles Ronald46,Shah Sanjiv47,Lenihan Daniel48,Azevedo Olga49,Tan Cheng Yin50,Murali Srinivas51,Zivkovic Sasa52,Correia Edileide de Barros53,Nicolau Jose Nativi54,Tallaj Jose55,Fine Nowell56,Tschöpe Carsten57,Torrón Roberto Fernandéz58,Polydefkis Michael59,Obici Laura60,Badelita Sorina61,Gottlieb Stephen62,Tauras James63,Ventura Hector64,Brunkhorst Robert65,Darstein Felix66,Oh Jeeyoung67,Marburger Tessa68,Mueller Christopher69,Cleemput Johan Van70,Salutto Valeria Lujan71,Parman Yesim72,Chao Chi-Chao73,Sarswat Nitasha74,Warner Alberta75,Steidley David76,Ralph Jeffrey77,Cotts William78,Hoffman James79,Rugiero Marcelo80,Misawa Sonoko81,Muñoz-Blanco José Luis82,Davila Lucia Galan83,Sadeh Menachem84,Luo Jin85,Kyriakides Theodoros86,Wang Annabel87,Kaufmann Horacio88,

Affiliation:

1. Unidade Corino Andrade, Centro Hospitalar Universitário de Santo António, Porto, Portugal

2. Division of Hematology, Mayo Clinic, Rochester, MN, USA

3. Department of Cardiovascular Diseases, Mayo Clinic, Rochester, MN, USA

4. CHULN-Hospital de Santa Maria, FML, Universidade de Lisboa, Lisbon, Portugal

5. National Amyloidosis Referral Center, CEPARM, Federal University of Rio de Janeiro, Rio de Janeiro, Brazil

6. Department of Cardiology, Angiology, Respiratory Medicine, Medical University of Heidelberg, Heidelberg, Germany

7. Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden

8. Department of Medical and Surgical Sciences, DIMEC, University of Bologna, Bologna, Italy

9. Department of Cardiology, IRCCS Azienda Ospedaliero-Universitaria di Bologna Policlinico S Orsola-Malpighi, Bologna, Italy

10. Hospital Son Llatzer, Palma de Mallorca, Spain

11. Columbia University College of Physicians and Surgeons, New York, NY, USA

12. East Paris‐Créteil University, Hopital Henri Mondor, Assistance Publique‐Hopitaux de Paris, Créteil, France

13. Hospital Universitario Puerta de Hierro Majadahonda, CIBERCV, Madrid, Spain

14. Centro Nacional de Investigaciones Cardiovasculares, Madrid, Spain

15. Department of Neurology, Clinic of Nervous Diseases, UMBAL Aleksandrovska, Medical University‐Sofia, Sofia, Bulgaria

16. Department of Cognitive Science, New Bulgarian University, Sofia, Bulgaria

17. Hospital Universitari de Bellvitge, IDIBELL, CIBER-CV, Barcelona, Spain

18. Department of Cardiology, University Hospital Rangueil, Toulouse, France

19. NYU Langone School of Medicine, New York, NY, USA

20. Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Mexico City, Mexico

21. Pfizer Inc., New York, NY, USA

22. Universitatsklinikum Münster–Transplant Hepatology, Münster, Germany

23. University of PA–Perelman Center for Advanced Medicine, Philadelphia, PA, USA

24. FLENI, Ciudad Autonoma de Buenos, Aires, Argentina

25. Kumamoto University, Kumamoto-city, Japan

26. Shinshu University School of Medicine, Matsumoto, Japan

27. University of Messina, Messina, Italy

28. Samsung Medical Center, Sungkyunkwan University School of Medicine, Seoul, Republic of Korea

29. Vanderbilt University School of Medicine, Nashville, TN, USA

30. Fondazione Policlinico Gemelli–Università Cattolica del Sacro Cuore, Roma, Italy

31. Cleveland Clinic Foundation, Cleveland, OH, USA

32. The OH University College of Medicine, Columbus, OH, USA

33. Hospital Juan Ramon Jimenez, Huelva, Spain

34. CHU de Bicetre, Cedex, France

35. Aarhus University Hospital, Skejby, Aarhus, Denmark

36. Karolinska University Hospital, Huddinge, Stockholm, Sweden

37. University Medical Center Groningen, Groningen, The Netherlands

38. Azienda Ospedaliero-Universitaria di Careggi, Firenze, Italy

39. Fondazione Toscana Gabriele Monasterio per la Ricerca Medica e di Sanità Pubblica, Pisa, Italy

40. Smilow Cancer Hospital at Yale-New Haven, New Haven, CT, USA

41. Institut Clinic de Nefrologia i Urologia–ICNU, Hospital Clinic i Provincial de Barcelona, Barcelona, Spain

42. CHU de Fort de France, Fort de France, France

43. UC Denver, Aurora, CO, USA

44. University of MI, Ann Arbor, MI, USA

45. Sheba Medical Center, Ramat Gan, Israel

46. Stanford University School of Medicine, Stanford, CA, USA

47. Northwestern University, Chicago, IL, USA

48. WA University School of Medicine, St. Louis, MO, USA

49. Centro Hospitalar do Alto Ave, EPE, Guimarães, Portugal

50. University Malaya Medical Centre, Kuala Lumpur, Malaysia

51. Wexford Health + Wellness Pavillion, Pittsburgh, PA, USA

52. University of Pittsburgh Medical Center, Pittsburgh, PA, USA

53. Instituto Dante Pazzanese de Cardiologia, São Paulo, Brazil

54. University of UT Health Sciences Center, Salt Lake City, UT, USA

55. University of AL at Birmingham, Birmingham, AL, USA

56. University of Alberta Foothills Medical Centre, Calgary, AB, Canada

57. Charité Campus Rudolf-Virchow-Klinikum, Berlin, Germany

58. Hospital Universitario Donostia, Gipuzkoa–San Sebastian, Gipuzkoa, Spain

59. Johns Hopkins Hospital, Baltimore, MD, USA

60. Centro per lo Studio e la Cura delle Amiloidosi Sistemiche, Pavia, Italy

61. Institutul de Cardiologie Prof. Dr. C. C. Iliescu Spitalului Fundeni, Bucuresti, Romania

62. University of MD, Baltimore, MD, USA

63. Montefiore Medical Center-Jack D. Weiler Hospital, Bronx, NY, USA

64. John Ochsner Heart & Vascular Institute, New Orleans, LA, USA

65. University Hospital of RWTH Aachen, Aachen, Germany

66. Johann-Gutenberg-Universität, Mainz, Germany

67. Konkuk University Medical Center, Seoul, Republic of Korea

68. OR Health and Science University, Portland, OR, USA

69. Medical College of WI, Milwaukee, WI, USA

70. Afdeling Klinische Cardiologie, O&N I, Leuven, Belgium

71. Instituto de Investigaciones Médicas Alfredo Lanari, Ciudad Autonoma de Buenos Aires, Buenos Aires, Argentina

72. Department of Neurology, Istanbul Faculty of Medicine, Istanbul University, Istanbul, Turkey

73. National Taiwan University Hospital, Taipei, Taiwan

74. University of Chicago Medical Center, Chicago, IL, USA

75. VA Greater Los Angeles Healthcare System, Los Angeles, CA, USA

76. Mayo Clinic AZ, Phoenix, AZ, USA

77. Department of Neurology, University of CA–San Francisco, San Francisco, CA, USA

78. Advocate Christ Medical Center, Oak Lawn, IL, USA

79. University of Miami Hospital & Clinics, Miami, FL, USA

80. Hospital Italiano de Buenos Aires, Buenos Aires, Argentina

81. Chiba University Hospital, Chiba-shi, Japan

82. Hospital Gregorio Marañón, Madrid, Spain

83. Hospital Clinico San Carlos, Madrid, Spain

84. Wolfson Medical Center, Holon, Israel

85. Temple University School of Medicine, Philadelphia, PA, USA

86. Cyprus Institute of Neurology and Genetics, Nicosia, Cyprus

87. University of California, Irvine, Orange, CA, USA

88. NYU Medical Center, New York, NY, USA

Publisher

Informa UK Limited

Subject

Internal Medicine

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