International Registry

ICI-Myocarditis
International Registry

A multinational collaborative registry investigating immune checkpoint inhibitor-associated myocarditis — its predictors, severity, and impact on survival in cancer patients.

1,825Cases
189Institutions
30Countries
7+Publications
Background

About the Registry

Immune checkpoint inhibitors (ICI) are monoclonal antibodies targeting surface receptors on T-lymphocytes — including CTLA-4, PD-1, LAG-3 — or their ligands such as PD-L1, designed to boost the immune response against cancer. They have become cornerstone treatments across melanoma, lung, renal, head and neck, urothelial, hepatocellular, and many other cancer types, with indications continuing to expand.

However, ICI-induced immune activation can lead to autoimmune-related adverse events (irAEs) affecting any organ. Among these, cardiomyotoxicities — encompassing inflammation of the heart and peripheral skeletal muscles — are uncommon but the most fatal irAEs, with mortality rates up to 50%. These myotoxicities are characterized by inflammatory infiltration with macrophages and cytotoxic auto-reactive T-cells targeting muscular antigens such as α-myosin, with the heart and peripheral muscles specifically and concomitantly affected.

Clinically, patients may experience life-threatening arrhythmias, cardiogenic shock, or severe myositis with invalidating dysphagia or respiratory muscle failure mimicking myasthenic syndrome — potentially requiring mechanical ventilation.

Why a Registry?

An in-depth understanding of ICI myotoxicity incidence, predictors, and prognostic impact is crucial for clinicians managing cancer patients. Because these events are very rare, meaningful insights require large-scale multinational collaboration — beyond what single-centre cohorts or clinical trials can provide.

Registry Leadership

This ICI-myocarditis registry is led by Prof. Douglas B. Johnson (Vanderbilt University Medical Center), with scientific direction from Prof. Joe-Elie Salem (Sorbonne University / Hôpital Pitié-Salpêtrière, Paris) and Prof. Javid Moslehi (University of California San Francisco).

Research Output

Selected Publications

Nature Medicine

Fenioux C, Abbar B, Boussouar S, et al. (2023)

Thymus alterations and susceptibility to immune checkpoint inhibitor myocarditis.

Nature Medicine. 29(12):3100-3110

doi: 10.1038/s41591-023-02591-2 ↗
Circulation

Lehmann LH, Heckmann MB, Bailly G, et al. (2023)

Cardiomuscular Biomarkers in the Diagnosis and Prognostication of Immune Checkpoint Inhibitor Myocarditis.

Circulation. 148(6):473-486

doi: 10.1161/CIRCULATIONAHA.123.062405 ↗
Eur Heart Journal

Power JR, Dolladille C, Ozbay B, et al. (2026)

Immune checkpoint inhibitor-associated myocarditis: a novel risk score.

European Heart Journal. 47(9):1050-1062

doi: 10.1093/eurheartj/ehaf315 ↗
JACC CardioOncol

Chen YC, Dolladille C, Rao A, et al. (2025)

Immune Checkpoint Inhibitor Myocarditis and Left Ventricular Systolic Dysfunction.

JACC CardioOncology. 7(3):234-248

doi: 10.1016/j.jaccao.2025.01.020 ↗
Circulation

Power JR, Alexandre J, Choudhary A, et al. (2021)

Electrocardiographic Manifestations of Immune Checkpoint Inhibitor Myocarditis.

Circulation. 144(18):1521-1523

doi: 10.1161/CIRCULATIONAHA.121.055816 ↗
Eur J Cancer

Nowatzke J, Guedeney P, Palaskas N, et al. (2022)

Coronary artery disease and revascularization associated with immune checkpoint blocker myocarditis: Report from an international registry.

European Journal of Cancer. 177:197-205

doi: 10.1016/j.ejca.2022.07.018 ↗
Arch Cardiovasc Dis

Power JR, Alexandre J, Choudhary A, et al. (2022)

Association of early electrical changes with cardiovascular outcomes in immune checkpoint inhibitor myocarditis.

Archives of Cardiovascular Diseases. 115(5):315-330

doi: 10.1016/j.acvd.2022.03.003 ↗
Global Network

Contributing Institutions

189 contributing institutions across 30 countries. Click a country to expand the list of participating centers.

Contributing institutions world map
Australia 4 ▼
  • Peter MacCallum Cancer Centre
  • Westmead Hospital
  • Alfred Health, Monash University
  • Royal North Shore Hospital
Austria 1 ▼
  • Medical University of Graz
Belgium 3 ▼
  • Hopital Universitaire de Bruxelles
  • Centre Hospitalier de Mouscron
  • Cliniques universitaires Saint-Luc
Canada 6 ▼
  • Toronto General Hospital
  • Mc Master University
  • Montreal Heart Institute
  • Sunnybrook
  • University of Alberta
  • University of Toronto
China 10 ▼
  • The Second Hospital of Tianjin Medical University
  • Shanghai Jiao Tong University
  • Qianfoshan Hospital
  • The University of Hong Kong
  • The First Affiliated Hospital of Harbin Medical University
  • Tongji Medical College of Huazhong University of Science and Technology
  • Guangdong Academy of Medical Sciences
  • The First Affiliated Hospital of Weifang Medical University
  • General Hospital of Chinese People's Liberation Army
  • The Second Xiangya Hospital of Central South University
Croatia 1 ▼
  • Klinički Bolnički Centar Sestre Milosrdnice
Denmark 2 ▼
  • Department of Oncology ,Aarhus University Hospital
  • National Center for Cancer Immune Therapy (CCIT-DK), Department of Oncology, Copenhagen University Hospital, Herlev, Denmark
France 33 ▼
  • APHP Hopital Pitie Salpetriere
  • Hospices Civils de Lyon
  • Aix Marseille University
  • CHU Montpellier
  • APHP Hopital Lariboisiere
  • CHU Lille
  • CHU Caen
  • CHU Rangueil Toulouse
  • APHP Hopital Saint Antoine
  • CHRU Tours Hopital Trousseau
  • APHP Hopital Bichat
  • Bordeaux University Hospital
  • Hôpital Nord Laennec-CHU Nantes
  • APHP Hopital Henri Mondor
  • CHU Strasbourg
  • Hospital Foch
  • APHP Hopital Georges Pompidou
  • CH de Valenciennes
  • CHU de Rouen
  • CHU Rennes
  • CHU Clermont Ferrand
  • CH Annecy Genevois
  • CH Morlaix
  • CHU Nice
  • CHU St-Etienne
  • CHU de Poitiers
  • Centre Hospitalier Avignon
  • Centre Hospitalier Memorial France Etats-Unis de Saint-Lo
  • Centre Hospitalier Saint joseph saint luc
  • Gustave Roussy
  • Hôtel-Dieu - CHU de Nantes
  • ICO Nantes
  • Institut Bergonie Centre de Lutte contre le Cancer
Germany 6 ▼
  • Heidelberg University Hospital
  • University Hospital LMU
  • University Hospital Erlangen
  • Charite Campus Mitte (CMM)
  • ELK Thorax Center
  • University Hospital Mainz
India 1 ▼
  • HCG Aastha Cancer Centre
Israel 5 ▼
  • Hadassah University Medical Center
  • Rabin Medical Center
  • Tel Aviv Sourasky Medical Center
  • Sheba Medical Center
  • Rambam Health Care Campus
Italy 8 ▼
  • Cardiology - Versilia Hospital, Azienda USL Toscana Nord Ovest
  • Ospedale Guglielmo da Saliceto di Piacenza
  • San Raffaele Hospital
  • IRCCS Azienda Ospedaliera Metropolitana, Genoa
  • Istituto Nazionale Tumori IRCCS Fondazione G. Pascale
  • Neurology Unit, Novi Ligure, ASLAL
  • Niguarda Hospital
  • University of Perugia
Japan 16 ▼
  • National Cancer Center Hospital East, Japan
  • IUHW Mita Hospital
  • University of Tsukuba
  • Anjo Kosei Hospital
  • Japan Community Health Organization Kyushu Hospital
  • Keio University
  • Kumamoto University
  • Mitsui Memorial Hospital
  • Nagoya University Graduate School of Medicine
  • Saiseikai Narashino Hospital
  • Sendai Kousei Hospital
  • Shinshu University
  • St. Luke's International Hospital
  • Teikyo University School of Medicine
  • Tokyo Saiseikai Central Hospital
  • Tokyo Women's Medical University
Lebanon 2 ▼
  • Department of Internal Medicine, Division of Cardiology,American University of Beirut Medical Center, Beirut, Lebanon
  • Saint Joseph University
Mexico 1 ▼
  • Hospital Angeles Querétaro
Morocco 1 ▼
  • Cardiology, Ibn Rochd University Hospital Center, Casablanca, MAR
Oman 1 ▼
  • Sultan Qaboos Comprehensive Cancer Care and Research Center
Pakistan 1 ▼
  • Allama Iqbal Medical College
Poland 1 ▼
  • Maria Sklodowska-Curie National Research Institute of Oncology
Portugal 1 ▼
  • Centro Hospitalar e Universitário de Coimbra
Romania 1 ▼
  • Iuliu Hațieganu University of Medicine and Pharmacy
Singapore 1 ▼
  • Division of Medical Oncology, National Cancer Centre Singapore, Singapore
Slovenia 1 ▼
  • General Hospital Celje
Spain 8 ▼
  • Hospital Universitari Vall d'Hebron
  • Bellvitge University Hospital
  • Hospital General Universitario Gregorio Marañón
  • Hospital Universitario Central de Asturias (HUCA)
  • Hospital Universitario La Paz
  • Clinica Universidad de Navarra
  • Heart Failure and Inheritied Cardiac Diseases Unit, Department of Cardiologyu
  • Hospital Clínico San Carlos
Switzerland 4 ▼
  • Centre Hospitalier Universitaire Vaudois
  • University Hospital Basel
  • Bern University Hospital
  • Geneva University Hospitals and Medical Faculty
Taiwan 2 ▼
  • Chi Mei Medical Center
  • Taipei Medical University Hospital
Turkey 2 ▼
  • Department of Medical Oncology, Faculty of Medicine, Medipol University
  • Department of Medical Oncology, Harran University Faculty of Medicine, Haliliye/Şanlıurfa, Turkey
United Arab Emirates 1 ▼
  • Cleveland ClinicAbu Dhabi,Al Maryah Island
United Kingdom 4 ▼
  • The Christie
  • Barts Health NHS Trust University College London Hospital
  • Mount Vernon Cancer Centre
  • Withybush General Hospital
United States 61 ▼
  • MD Anderson Cancer Center
  • Mayo Clinic (Rochester, Phoenix, and Jacksonville)
  • University of Michigan
  • UCLA
  • University of Washington
  • Vanderbilt University Medical Center
  • Beth Israel Deaconess Medical Center
  • Stanford University
  • University of California San Diego Health
  • University of Iowa
  • University of Texas Southwestern Medical Center
  • University of Pittsburgh Medical Center
  • Cedars-Sinai Medical Center
  • Washington University in St. Louis
  • Weill Cornell Medicine
  • MedStar Georgetown University Hospital
  • University of California San Francisco
  • University of Virginia
  • Yale University
  • Maine Medical Center
  • Providence St. Joseph Health
  • Johns Hopkins University
  • UNC Eshelman School of Pharmacy
  • Dartmouth Hitchcock Medical Center
  • University of Texas at Austin Ascension Seton
  • Medical College of Georgia at Augusta University
  • Northwell Health
  • University of Colorado
  • Emory University
  • University of Wisconsin Hospitals
  • NYU Langone Health
  • Northwestern University
  • University of Utah
  • Medstar Heart and Vascular Institute
  • Rosewell Park Cancer Center
  • Tucson Medical Center
  • Center for Cancer Research National Cancer Institute National Institutes of Health
  • Cleveland Clinic Foundation
  • Ohio State University Wexner Medical Center
  • University of Alabama at Birmingham
  • University of California at Davis
  • University of Maryland Medical Center
  • Vidant Medical Center/East Carolina University
  • Baylor College of Medicine
  • Brigham & Women's Hospital
  • Cooper University Hospital
  • Dana Farber Cancer Institute
  • Edward via College of Osteopathic Medicine
  • Eisenhower Medical Center
  • Hartford Hospital
  • Heart Care Centers of Illinois
  • Houston Methodist Hospital
  • Lahey Hospital and Medical Center
  • Marshall University
  • Memorial Sloan Kettering Cancer Center
  • New York Institute of Technology College of Osteopathic Medicine
  • University of Chicago
  • University of Florida
  • University of Southern California
  • VCU Medical center
  • Veterans Affairs Puget Sound Health Care System-Seattle
Collaborate

Join the Registry

Become a Contributing Center

We welcome institutions worldwide. Participation involves secure online data entry via REDCap (hosted at Vanderbilt University Medical Center). Each site retains access only to its own submitted cases via unique, password-protected access codes.

Authorship Criteria
1–9 cases Contributing center and collaborators acknowledged as part of the collaborative group
≥10 cases 1 co-author on registry publications
≥15 cases 1 co-author + 1 investigator
≥20 cases 2 co-authors
≥65 cases 3 co-authors
Data Entry Secure REDCap platform; each site accesses only its own cases
Privacy Fully de-identified data; no patient names or record numbers collected
Ethics IRB #222075; NCT04294771. Local ethics approval required before submission
Data Rights Data not shared with third parties without explicit written approval from contributing sites
✉   Contact us to join

Storage & Access. All data are stored on HIPAA-compliant, encrypted REDCap servers hosted at Vanderbilt University Medical Center. Only the Principal Investigator and scientific directors have access to the complete dataset. All data access activities are logged and monitored.

Security. Data transmission uses SSL/TLS encryption. No identifiable patient information is collected. Multi-factor authentication is required for dataset access. Regular security audits are conducted.

Patient Privacy. All data are fully de-identified before registry entry. Dates are transformed to relative time intervals (e.g., days from ICI initiation to myocarditis onset).

Data Sharing. Data will not be shared with any third party outside the research team without explicit written approval from contributing sites. No commercial use of data is permitted without separate agreements.