Patients with transthyretin amyloidosis enrolled in THAOS between 2018 and 2021 continue to experience substantial diagnostic delay
Amyloid
.
2023 Dec;30(4):445-448.
doi: 10.1080/13506129.2023.2229484.
Epub 2023 Jul 17.
Authors
Teresa Coelho
1
,
Angela Dispenzieri
2
,
Martha Grogan
3
,
Isabel Conceição
4
,
Márcia Waddington-Cruz
5
,
Arnt V Kristen
6
,
Jonas Wixner
7
,
Igor Diemberger
8
9
,
Juan Gonzalez-Moreno
10
,
Mathew S Maurer
11
,
Violaine Planté-Bordeneuve
12
,
Pablo Garcia-Pavia
13
14
,
Ivailo Tournev
15
16
,
Jose Gonzalez-Costello
17
,
Eve Cariou
18
,
Alejandra González-Duarte
19
20
,
Oliver Glass
21
,
Doug Chapman
21
,
Leslie Amass
21
;
THAOS investigators
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
No abstract available
MeSH terms
Amyloid Neuropathies, Familial* / diagnosis
Amyloid Neuropathies, Familial* / genetics
Delayed Diagnosis*
Humans
Prealbumin / genetics
Substances
Prealbumin
Supplementary concepts
Amyloidosis, Hereditary, Transthyretin-Related