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Moving towards establishing centres of excellence in cardiac amyloidosis: an International Cardio-Oncology Society statement
  1. Richard Cheng1,
  2. Michelle M Kittleson2,
  3. Ashutosh D Wechalekar3,
  4. Jose Alvarez-Cardona4,
  5. Joshua D Mitchell5,
  6. Ariane Vieira Scarlatelli Macedo6,
  7. Joao Pedro Passos Dutra7,
  8. Courtney M Campbell8,
  9. Jennifer E Liu9,
  10. Heather J Landau10,
  11. Margot K Davis11,
  12. Siobhain Morrissey12,
  13. Stephen Casselli13,
  14. Isabelle Lousada14,
  15. Juliane Dantas Seabra-Garcez15,
  16. Roberta Shcolnik Szor16,
  17. Sarju Ganatra17,
  18. Barry Trachtenberg18,
  19. Mathew S Maurer19,
  20. Keith Stockerl-Goldstein20,
  21. Daniel Lenihan21
  1. 1 Division of Cardiology, University of Washington, Seattle, Washington, USA
  2. 2 Cardiology, Cedars Sinai Heart Institute, Los Angeles, California, USA
  3. 3 National Amyloidosis Centre, University College London (Royal Free Campus), London, UK
  4. 4 Cardiology, New York University Grossman School of Medicine, New York, New York, USA
  5. 5 Cardiology/IM, Washington University in St Louis, St Louis, Missouri, USA
  6. 6 Cardiology, Santa Casa de Misericórdia de São Paulo, São Paulo, Brazil
  7. 7 Center for Oncological Research (CEPON) and SOS Cardio Hospital in Florianópolis, Santa Catarina, Brazil
  8. 8 Baylor Scott and White Heart and Vascular Hospital, Baylor University Medical Center, Dallas, Texas, USA
  9. 9 Medicine, Memorial Sloan Kettering Cancer Center, New York, New York, USA
  10. 10 Oncology, Memorial Sloan Kettering Cancer Center, New York, New York, USA
  11. 11 Cardiology, University of British Columbia, Vancouver, British Columbia, Canada
  12. 12 Oncology, Barnes Hospital School of Nursing, Saint Louis, Missouri, USA
  13. 13 International Cardio-Oncology Society, Tampa, Florida, USA
  14. 14 Amyloidosis Research Consortium, Newton, Massachusetts, USA
  15. 15 Hospital Primavera, Aracaju, Sergipe, Brazil
  16. 16 Hospital 9 de Julho, São Paulo, Brazil
  17. 17 Lahey Hospital and Medical Center, Burlington, Massachusetts, USA
  18. 18 Houston Methodist Hospital, Houston, Texas, USA
  19. 19 Center for Advanced Cardiac Care, Columbia University Medical Center, New York, New York, USA
  20. 20 Oncology, Washington University in St Louis, St Louis, Missouri, USA
  21. 21 Cardiology, International Cardio-Oncology Society and St Frances Healthcare, Cape Girardeau, Missouri, USA
  1. Correspondence to Dr Daniel Lenihan, Cardiology, International Cardio-Oncology Society and St Frances Healthcare, Cape Girardeau, MO 63703, USA; cardio-oncologydoc{at}protonmail.com

Abstract

The prevalence of amyloidosis has been increasing, driven by a combination of improved awareness, evolution of diagnostic pathways, and effective treatment options for both transthyretin and light chain amyloidosis. Due to the complexity of amyloidosis, centralised expert providers with experience in delineating the nuances of confirmatory diagnosis and management may be beneficial. There are many potential benefits of a centre of excellence designation for the treatment of amyloidosis including recognition of institutions that have been leading the way for the optimal treatment of this condition, establishing the expectations for any centre who is engaging in the treatment of amyloidosis and developing cooperative groups to allow more effective research in this disease space. Standardising the expectations and criteria for these centres is essential for ensuring the highest quality of clinical care and community education. In order to define what components are necessary for an effective centre of excellence for the treatment of amyloidosis, we prepared a survey in cooperation with a multidisciplinary panel of amyloidosis experts representing an international consortium. The purpose of this position statement is to identify the essential elements necessary for highly effective clinical care and to develop a general standard with which practices or institutions could be recognised as a centre of excellence.

  • Cardiomyopathy, Restrictive
  • Heart Failure

https://doi.org/10.1136/heartjnl-2023-323502

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    Footnotes

    • X @RichardKCheng2, @MKittlesonMD, @joshmitchellmd, @joaopedrocardio, @cyclingdoctor

    • Contributors All the authors were involved with the conception and design of the manuscript, drafting the manuscript and revising it critically, and final approval of the manuscript.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests JM is a consultant (modest) for Bridgebio. SM has received speaker fees from AstraZeneca, Pfizer, Janssen, Astellas, Bayer and Edwards, and is on advisory boards for Pfizer and AstraZeneca. SC is employed by International Cardio-Oncology Society (IC-OS), a non-profit company. IL is the founder of the Amyloidosis Research Consortium. DL is a member of a data safety board for Intellia and a consultant for the IC-OS. All other authors report no conflicts.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.