Manifesto for the future of cardiomyopathy care

HPP supported the International Cardiomyopathy Network (ICoN) in formulating a shared vision to drive change for cardiomyopathy

Context

Cardiomyopathy is a disease of the heart muscle that affects people of all ages. Despite being a rare disease, it is a leading cause of heart failure and sudden cardiac death, and accounts for more than half of heart transplants.

The onset and severity of cardiomyopathy are influenced by genetic and environmental factors, demanding highly personalised care that is at the forefront of innovative approaches to cardiovascular diseases.

There are people who are at risk of developing cardiomyopathy but who do not currently have clinical symptoms – the risk is heightened in relatives of people already diagnosed with the condition. Genetic testing in this group can help to detect early signs of cardiomyopathy and prevent it silently progressing into a more serious disease.

While cardiomyopathy care has barely changed in decades, more stakeholders are challenging the status quo to stimulate research and improve access to optimal care.

What we’ve achieved

HPP has supported ICoN to develop its inaugural landmark report: a manifesto that lays out a vision for the future of cardiomyopathy care. It was created with leading experts in cardiomyopathy and related fields, including cardiologists, geneticists, patient advocates and industry representatives.

The manifesto presents consensus-based objectives and priority actions to mobilise multi-sectoral collaboration and drive change for people with cardiomyopathy and their families. It is accompanied by an advocacy toolkit presenting the main messages from the report, including key statistics of the burden of cardiomyopathy as well as a vision for the future.

Key partners and stakeholders

ICoN’s trustees:

  • Dr Aristides Anastasakis, Onassis Cardiac Surgery Centre, Greece
  • Professor Eloisa Arbustini, University Hospital, Policlinico San Matteo, Italy
  • Professor Lucie Carrier, University Medical Center Hamburg-Eppendorf, Germany
  • Professor Perry Elliott, University College London, St Bartholomew’s Hospital, ESC Heart Academy and Cardiomyopathy UK
  • Dr Juan Ramón Gimeno, Hospital Clinico Universitario Virgen de la Arrixaca and Universidad de Murcia, Spain
  • Professor Juan Pablo Kaski, University College London and Great Ormond Street Hospital for Children, UK
  • Professor Aleš Linhart, Center for Fabry Disease and Pulmonary Hypertension, Czech Republic
  • Professor Iacopo Olivotto, University of Florence, Meyer Children’s Hospital and Careggi University Hospital, Italy
  • Professor Jolanda van der Velden, Amsterdam University Medical Centres, VU University, the Netherland

ICoN’s Steering Committee:

  • Professor Connie Bezzina, Amsterdam University Medical Centres, University of Amsterdam, the Netherlands
  • Professor Ruxandra Jurcut, Expert Centre for Rare Genetic Cardiovascular Disease, Romania
  • Professor Giuseppe Limongelli, Luigi Vanvitelli University Hospital, Italy
  • Dr Michelle Michels, Erasmus Medical Center Rotterdam, the Netherlands
  • Professor Jens MogensenAalborg University Hospital, Denmark
  • Dr Stathis Papatheodorou, Onassis Cardiac Surgery Center and Greek National Network of Precision Medicine in Cardiology and the Prevention of Sudden Death in the Young, Greece
  • Joel Rose, Cardiomyopathy UK, UK
  • Dr Sergio Scaccabarozzi, Arithmos, Italy

Expert interviewees:

  • Ruth Biller, ARVC-Selbsthilfe e.V.; European Patient Advocacy Group, European Reference Network GUARD-Heart; person with lived experience of cardiomyopathy, Germany
  • Gabriel Brooks, Solid Biosciences, US
  • Angus Clarke, Cardiff University Institute of Medical Genetics, UK
  • Dr Paul van Haelst, World Wide Medical Cardiovascular, Bristol Myers Squibb, Switzerland
  • Professor Juan Pablo Kaski, University College London and Great Ormond Street Hospital for Children, UK
  • Professor Giuseppe Limongelli, Luigi Vanvitelli University Hospital, Italy
  • Professor Iacopo Olivotto, University of Florence, Meyer Children’s Hospital and Careggi University Hospital, Italy
  • Natalia Paterson, Tenaya Therapeutics, Spain
  • Matteo Pinciroli, Global Heart Hub Cardiomyopathy Patient Council; person with lived experience of cardiomyopathy, Italy

Project funding

The Health Policy Partnership was commissioned to develop this report by ICoN. The project was sponsored by Sanofi, Illumina, Bristol Myers Squibb, Tenaya and AstraZeneca.

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