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

Teresa Coelho¹, Angela Dispenzieri², Martha Grogan³, Isabel Conceição⁴, Márcia Waddington-Cruz⁵, Arnt V Kristen⁶, Jonas Wixner⁷, Igor Diemberger^{8

9}, Juan Gonzalez-Moreno¹⁰, Mathew S Maurer¹¹, Violaine Planté-Bordeneuve¹², Pablo Garcia-Pavia^{13

14}, Ivailo Tournev^{15

16}, Jose Gonzalez-Costello¹⁷, Eve Cariou¹⁸, Alejandra González-Duarte^{19

20}, Oliver Glass²¹, Doug Chapman²¹, Leslie Amass²¹; THAOS investigators

Collaborators, Affiliations

Collaborators

THAOS investigators:
Anna Hüsing-Kabar, Brian Drachman, Fabio Adrian Barroso, Mitsuharu Ueda, Yoshiki Sekijima, Anna Mazzeo, Luca Gentile, Eun-Seok Jeon, David Slosky, Marco Luigetti, Mazen Hanna, Miriam Freimer, Francisco Muñoz-Beamud, David Adams, Henning Mølgaard, Rayomand Press, Hans Nienhuis, Calogero Lino Cirami, Michele Emdin, Edward Miller, Josep Maria Campistol Plana, Jocelyn Inamo, Dianna Quan, Scott Hummel, Amir Dori, Ronald Witteles, Sanjiv Shah, Daniel Lenihan, Olga Azevedo, Cheng Yin Tan, Srinivas Murali, Sasa Zivkovic, Edileide de Barros Correia, Jose Nativi Nicolau, Jose Tallaj, Nowell Fine, Carsten Tschöpe, Roberto Fernandéz Torrón, Michael Polydefkis, Laura Obici, Sorina Badelita, Stephen Gottlieb, James Tauras, Hector Ventura, Robert Brunkhorst, Felix Darstein, Jeeyoung Oh, Tessa Marburger, Christopher Mueller, Johan Van Cleemput, Valeria Lujan Salutto, Yesim Parman, Chi-Chao Chao, Nitasha Sarswat, Alberta Warner, David Steidley, Jeffrey Ralph, William Cotts, James Hoffman, Marcelo Rugiero, Sonoko Misawa, José Luis Muñoz-Blanco, Lucia Galan Davila, Menachem Sadeh, Jin Luo, Theodoros Kyriakides, Annabel Wang, Horacio Kaufmann

Affiliations

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.

PMID: 37459334
DOI: 10.1080/13506129.2023.2229484

Free article

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

Teresa Coelho et al. Amyloid. 2023 Dec.

Free article

. 2023 Dec;30(4):445-448.

doi: 10.1080/13506129.2023.2229484. Epub 2023 Jul 17.

Authors

Collaborators

THAOS investigators:
Anna Hüsing-Kabar, Brian Drachman, Fabio Adrian Barroso, Mitsuharu Ueda, Yoshiki Sekijima, Anna Mazzeo, Luca Gentile, Eun-Seok Jeon, David Slosky, Marco Luigetti, Mazen Hanna, Miriam Freimer, Francisco Muñoz-Beamud, David Adams, Henning Mølgaard, Rayomand Press, Hans Nienhuis, Calogero Lino Cirami, Michele Emdin, Edward Miller, Josep Maria Campistol Plana, Jocelyn Inamo, Dianna Quan, Scott Hummel, Amir Dori, Ronald Witteles, Sanjiv Shah, Daniel Lenihan, Olga Azevedo, Cheng Yin Tan, Srinivas Murali, Sasa Zivkovic, Edileide de Barros Correia, Jose Nativi Nicolau, Jose Tallaj, Nowell Fine, Carsten Tschöpe, Roberto Fernandéz Torrón, Michael Polydefkis, Laura Obici, Sorina Badelita, Stephen Gottlieb, James Tauras, Hector Ventura, Robert Brunkhorst, Felix Darstein, Jeeyoung Oh, Tessa Marburger, Christopher Mueller, Johan Van Cleemput, Valeria Lujan Salutto, Yesim Parman, Chi-Chao Chao, Nitasha Sarswat, Alberta Warner, David Steidley, Jeffrey Ralph, William Cotts, James Hoffman, Marcelo Rugiero, Sonoko Misawa, José Luis Muñoz-Blanco, Lucia Galan Davila, Menachem Sadeh, Jin Luo, Theodoros Kyriakides, Annabel Wang, Horacio Kaufmann

Affiliations

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.

PMID: 37459334
DOI: 10.1080/13506129.2023.2229484

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

Collaborators

Affiliations

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

Authors

Collaborators

Affiliations

References

MeSH terms

Substances

Supplementary concepts

LinkOut - more resources

Full Text Sources

Research Materials