Amyloid

The Journal of Protein Folding Disorders

Volume 30, 2023 - Issue 4

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Letters to the Editor

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

Teresa Coelhoa Unidade Corino Andrade, Centro Hospitalar Universitário de Santo António, Porto, Portugal

Angela Dispenzierib Division of Hematology, Mayo Clinic, Rochester, MN, USA

https://orcid.org/0000-0001-8780-9512

Martha Groganc Department of Cardiovascular Diseases, Mayo Clinic, Rochester, MN, USA

Isabel Conceiçãod CHULN-Hospital de Santa Maria, FML, Universidade de Lisboa, Lisbon, Portugal

https://orcid.org/0000-0003-0934-9631

Márcia Waddington-Cruze National Amyloidosis Referral Center, CEPARM, Federal University of Rio de Janeiro, Rio de Janeiro, Brazil

Arnt V. Kristenf Department of Cardiology, Angiology, Respiratory Medicine, Medical University of Heidelberg, Heidelberg, Germany

Jonas Wixnerg Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden

Igor Diembergerh Department of Medical and Surgical Sciences, DIMEC, University of Bologna, Bologna, Italy;i Department of Cardiology, IRCCS Azienda Ospedaliero-Universitaria di Bologna Policlinico S Orsola-Malpighi, Bologna, Italy

Juan Gonzalez-Morenoj Hospital Son Llatzer, Palma de Mallorca, Spain

Mathew S. Maurerk Columbia University College of Physicians and Surgeons, New York, NY, USA

Violaine Planté-Bordeneuvel East Paris‐Créteil University, Hopital Henri Mondor, Assistance Publique‐Hopitaux de Paris, Créteil, France

Pablo Garcia-Paviam Hospital Universitario Puerta de Hierro Majadahonda, CIBERCV, Madrid, Spain;n Centro Nacional de Investigaciones Cardiovasculares, Madrid, Spain

Ivailo Tournevo Department of Neurology, Clinic of Nervous Diseases, UMBAL Aleksandrovska, Medical University‐Sofia, Sofia, Bulgaria;p Department of Cognitive Science, New Bulgarian University, Sofia, Bulgaria

Jose Gonzalez-Costelloq Hospital Universitari de Bellvitge, IDIBELL, CIBER-CV, Barcelona, Spain

Eve Cariour Department of Cardiology, University Hospital Rangueil, Toulouse, France

Alejandra González-Duartes NYU Langone School of Medicine, New York, NY, USA;t Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Mexico City, Mexico

Oliver Glassu Pfizer Inc., New York, NY, USA

Doug Chapmanu Pfizer Inc., New York, NY, USA

Leslie Amassu Pfizer Inc., New York, NY, USACorrespondence[email protected]

& on behalf of the THAOS investigators show all

Anna Hüsing-Kabarv Universitatsklinikum Münster–Transplant Hepatology, Münster, Germany

Brian Drachmanw University of PA–Perelman Center for Advanced Medicine, Philadelphia, PA, USA

Fabio Adrian Barrosox FLENI, Ciudad Autonoma de Buenos, Aires, Argentina

Mitsuharu Ueday Kumamoto University, Kumamoto-city, Japan

Yoshiki Sekijimaz Shinshu University School of Medicine, Matsumoto, Japan

Anna Mazzeoaa University of Messina, Messina, Italy

Luca Gentileaa University of Messina, Messina, Italy

Eun-Seok Jeonbb Samsung Medical Center, Sungkyunkwan University School of Medicine, Seoul, Republic of Korea

David Sloskycc Vanderbilt University School of Medicine, Nashville, TN, USA

Marco Luigettidd Fondazione Policlinico Gemelli–Università Cattolica del Sacro Cuore, Roma, Italy

Mazen Hannaee Cleveland Clinic Foundation, Cleveland, OH, USA

Miriam Freimerff The OH University College of Medicine, Columbus, OH, USA

Francisco Muñoz-Beamudgg Hospital Juan Ramon Jimenez, Huelva, Spain

David Adamshh CHU de Bicetre, Cedex, France

Henning Mølgaardii Aarhus University Hospital, Skejby, Aarhus, Denmark

Rayomand Pressjj Karolinska University Hospital, Huddinge, Stockholm, Sweden

Hans Nienhuiskk University Medical Center Groningen, Groningen, The Netherlands

Calogero Lino Ciramill Azienda Ospedaliero-Universitaria di Careggi, Firenze, Italy

Michele Emdinmm Fondazione Toscana Gabriele Monasterio per la Ricerca Medica e di Sanità Pubblica, Pisa, Italy

Edward Millernn Smilow Cancer Hospital at Yale-New Haven, New Haven, CT, USA

Josep Maria Campistol Planaoo Institut Clinic de Nefrologia i Urologia–ICNU, Hospital Clinic i Provincial de Barcelona, Barcelona, Spain

Jocelyn Inamopp CHU de Fort de France, Fort de France, France

Dianna Quanqq UC Denver, Aurora, CO, USA

Scott Hummelrr University of MI, Ann Arbor, MI, USA

Amir Doriss Sheba Medical Center, Ramat Gan, Israel

Ronald Wittelestt Stanford University School of Medicine, Stanford, CA, USA

Sanjiv Shahuu Northwestern University, Chicago, IL, USA

Daniel Lenihanvv WA University School of Medicine, St. Louis, MO, USA

Olga Azevedoww Centro Hospitalar do Alto Ave, EPE, Guimarães, Portugal

Cheng Yin Tanxx University Malaya Medical Centre, Kuala Lumpur, Malaysia

Srinivas Muraliyy Wexford Health + Wellness Pavillion, Pittsburgh, PA, USA

Sasa Zivkoviczz University of Pittsburgh Medical Center, Pittsburgh, PA, USA

Edileide de Barros Correiaaaa Instituto Dante Pazzanese de Cardiologia, São Paulo, Brazil

Jose Nativi Nicolaubbb University of UT Health Sciences Center, Salt Lake City, UT, USA

Jose Tallajccc University of AL at Birmingham, Birmingham, AL, USA

Nowell Fineddd University of Alberta Foothills Medical Centre, Calgary, AB, Canada

Carsten Tschöpeeee Charité Campus Rudolf-Virchow-Klinikum, Berlin, Germany

Roberto Fernandéz Torrónfff Hospital Universitario Donostia, Gipuzkoa–San Sebastian, Gipuzkoa, Spain

Michael Polydefkisggg Johns Hopkins Hospital, Baltimore, MD, USA

Laura Obicihhh Centro per lo Studio e la Cura delle Amiloidosi Sistemiche, Pavia, Italy

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

Stephen Gottliebjjj University of MD, Baltimore, MD, USA

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

Hector Venturalll John Ochsner Heart & Vascular Institute, New Orleans, LA, USA

Robert Brunkhorstmmm University Hospital of RWTH Aachen, Aachen, Germany

Felix Darsteinnnn Johann-Gutenberg-Universität, Mainz, Germany

Jeeyoung Ohooo Konkuk University Medical Center, Seoul, Republic of Korea

Tessa Marburgerppp OR Health and Science University, Portland, OR, USA

Christopher Muellerqqq Medical College of WI, Milwaukee, WI, USA

Johan Van Cleemputrrr Afdeling Klinische Cardiologie, O&N I, Leuven, Belgium

Valeria Lujan Saluttosss Instituto de Investigaciones Médicas Alfredo Lanari, Ciudad Autonoma de Buenos Aires, Buenos Aires, Argentina

Yesim Parmanttt Department of Neurology, Istanbul Faculty of Medicine, Istanbul University, Istanbul, Turkey

Chi-Chao Chaouuu National Taiwan University Hospital, Taipei, Taiwan

Nitasha Sarswatvvv University of Chicago Medical Center, Chicago, IL, USA

Alberta Warnerwww VA Greater Los Angeles Healthcare System, Los Angeles, CA, USA

David Steidleyxxx Mayo Clinic AZ, Phoenix, AZ, USA

Jeffrey Ralphyyy Department of Neurology, University of CA–San Francisco, San Francisco, CA, USA

William Cottszzz Advocate Christ Medical Center, Oak Lawn, IL, USA

James Hoffmanaaaa University of Miami Hospital & Clinics, Miami, FL, USA

Marcelo Rugierobbbb Hospital Italiano de Buenos Aires, Buenos Aires, Argentina

Sonoko Misawacccc Chiba University Hospital, Chiba-shi, Japan

José Luis Muñoz-Blancodddd Hospital Gregorio Marañón, Madrid, Spain

Lucia Galan Davilaeeee Hospital Clinico San Carlos, Madrid, Spain

Menachem Sadehffff Wolfson Medical Center, Holon, Israel

Jin Luogggg Temple University School of Medicine, Philadelphia, PA, USA

Theodoros Kyriakideshhhh Cyprus Institute of Neurology and Genetics, Nicosia, Cyprus

Annabel Wangiiii University of California, Irvine, Orange, CA, USA

Horacio Kaufmannjjjj NYU Medical Center, New York, NY, USA

show all

References

Ando Y, Adams D, Benson MD, et al. Guidelines and new directions in the therapy and monitoring of ATTRv amyloidosis. Amyloid. 2022;29(3):143–155. doi: 10.1080/13506129.2022.2052838.
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Witteles RM, Bokhari S, Damy T, et al. Screening for transthyretin amyloid cardiomyopathy in everyday practice. JACC Heart Fail. 2019;7(8):709–716. doi: 10.1016/j.jchf.2019.04.010.
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Maurer MS, Sultan MB, Rapezzi C. Tafamidis for transthyretin amyloid cardiomyopathy. N Engl J Med. 2019;380(2):196–197. doi: 10.1056/NEJMc1814074.
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Gillmore JD, Maurer MS, Falk RH, et al. Nonbiopsy diagnosis of cardiac transthyretin amyloidosis. Circulation. 2016;133(24):2404–2412. doi: 10.1161/CIRCULATIONAHA.116.021612.
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Coelho T, Maurer MS, Suhr OB. THAOS–The Transthyretin Amyloidosis Outcomes Survey: initial report on clinical manifestations in patients with hereditary and wild-type transthyretin amyloidosis. Curr Med Res Opin. 2013;29(1):63–76. doi: 10.1185/03007995.2012.754348.
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Patients with transthyretin amyloidosis enrolled in THAOS between 2018 and 2021 continue to experience substantial diagnostic delay

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

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