Prognostic Role of Myocarditis-Like Episodes and Their Treatment in Patients With Pathogenic Desmoplakin Variants

A Alessio Gasperetti S Steven A. Muller (Department of Medicine, Division of Cardiology, Johns Hopkins University School of Medicine, Baltimore, MD (A.G., S.A.M., B.A., R.T.C., B.M., C. Tichnell, P.S., L.A., H.C., C.A.J., N.A.G.).) G Giovanni Peretto (Multidisciplinary Disease Unit for Myocarditis and Arrhythmogenic Cardiomyopathies, Istituto di Ricovero e Cura a Carattere Scientifico San Raffaele Scientific Institute, Milan, Italy (G.P.).) B Babken Asatryan (Department of Medicine, Division of Cardiology, Johns Hopkins University School of Medicine, Baltimore, MD (A.G., S.A.M., B.A., R.T.C., B.M., C. Tichnell, P.S., L.A., H.C., C.A.J., N.A.G.).) A Alexandros Protonotarios (Institute of Cardiovascular Science, University College London, United Kingdom (A.P., I.H., P.S., P.M.E.).) M Mikael Laredo (Sorbonne Université, AP-HP, IHU-ICAN, Groupe Hospitalier Pitié-Salpêtrière, Institut de Cardiologie, Paris, France (M.L., P.-Y.T., P.C., F.A., E.G.).) P Pierre-Yves Tarlet (Sorbonne Université, AP-HP, IHU-ICAN, Groupe Hospitalier Pitié-Salpêtrière, Institut de Cardiologie, Paris, France (M.L., P.-Y.T., P.C., F.A., E.G.).) P Petros Syrris (Institute of Cardiovascular Science, University College London, United Kingdom (A.P., I.H., P.S., P.M.E.).) R Richard T. Carrick (Department of Medicine, Division of Cardiology, Johns Hopkins University School of Medicine, Baltimore, MD (A.G., S.A.M., B.A., R.T.C., B.M., C. Tichnell, P.S., L.A., H.C., C.A.J., N.A.G.).) B Brittney Murray (Department of Medicine, Division of Cardiology, Johns Hopkins University School of Medicine, Baltimore, MD (A.G., S.A.M., B.A., R.T.C., B.M., C. Tichnell, P.S., L.A., H.C., C.A.J., N.A.G.).) C Crystal Tichnell (Department of Medicine, Division of Cardiology, Johns Hopkins University School of Medicine, Baltimore, MD (A.G., S.A.M., B.A., R.T.C., B.M., C. Tichnell, P.S., L.A., H.C., C.A.J., N.A.G.).) P Paul Scheel (Department of Medicine, Division of Cardiology, Johns Hopkins University School of Medicine, Baltimore, MD (A.G., S.A.M., B.A., R.T.C., B.M., C. Tichnell, P.S., L.A., H.C., C.A.J., N.A.G.).) M Marta Gigli (Cardiothoracovascular Department, Division of Cardiology, Azienda Sanitaria Universitaria Giuliano Isontina and University of Trieste, Italy (M.G., G.S., M.M.).) S Sing-Chien Yap (Erasmus MC, Rotterdam, Netherlands) K Kalliopi Pilichou C Cristina Basso K Kristen Medo (University of Colorado Cardiovascular Institute, University of Colorado Anschutz Medical Campus, Aurora (K.M., M.J., L.M., M.T.).) M Max Jason (University of Colorado Cardiovascular Institute, University of Colorado Anschutz Medical Campus, Aurora (K.M., M.J., L.M., M.T.).) V Valentina A. Rossi A Ardan M. Saguner (Department of Cardiology, Arrhythmia Unit, University Heart Center, University Hospital Zurich, Switzerland (V.A.R.., A.M.S., F.D.).) F Firat Duru D Dominic Abrams (Boston Children's Hospital, Boston, Massachusetts, United States) J Julia Cadrin-Tourigny (Research Center (S.S., P.J., S.G., I.H.-C., A.F., N.E.I., N.B., M.A., K.D., P.G.G., P.K., L.M., B.M., A.M.P., L.R., D.R., B.T., J.-C.T., J.C.-T., A.R.-P., R.T.), Montreal Heart Institute, QC, Canada.) M Mattia Targetti (University of Colorado Cardiovascular Institute, University of Colorado Anschutz Medical Campus, Aurora (K.M., M.J., L.M., M.T.).) M Maurizio Pieroni (Department of Experimental and Clinical Medicine, University of Florence, Meyer Children Hospital and Careggi University Hospital, Italy (M.P.).) M Maddalena Graziosi (Cardiac Thoracic and Vascular Department, Cardiology Unit, IRCCS Azienda Ospedaliero-Universitaria di Bologna, Italy (M.G., E.B.).) E Elena Biagini (Cardiac Thoracic and Vascular Department, Cardiology Unit, IRCCS Azienda Ospedaliero-Universitaria di Bologna, Italy (M.G., E.B.).) P Philippe Charron (Sorbonne Université, AP-HP, IHU-ICAN, INSERM 1166, Hôpital Universitaire Pitié-Salpêtrière, Paris, France) M Moniek Cox (Department of Cardiology, University Medical Centre Groningen, the Netherlands (M. Cox).) M Michela Casella C Claudio Tondo J James S. Ware S Sanjay K. Prasad (CMR Unit, Royal Brompton and Harefield Hospitals, Part of Guy’s and St Thomas’ NHS Foundation Trust, London, UK (S.K.P.).) L Leonardo Calò (Department of Cardiology, Policlinico Casilino, Rome, Italy (L. Calò).) E Eric Smith J Jodie Ingles H Harikrishna Tandri (Department of Medicine, Division of Cardiology, Vanderbilt University Medical Center, Nashville, TN (H.T.).) F Flavie Ader (Sorbonne Université, AP-HP, IHU-ICAN, Groupe Hospitalier Pitié-Salpêtrière, Institut de Cardiologie, Paris, France (M.L., P.-Y.T., P.C., F.A., E.G.).) S Stacey Peters (Royal Melbourne Hospital, Melbourne, Victoria, Australia (S.P., D.Z., J.R.).) D Dominica Zentner (Royal Melbourne Hospital, Melbourne, Victoria, Australia (S.P., D.Z., J.R.).) J Jeremy Russo (Royal Melbourne Hospital, Melbourne, Victoria, Australia (S.P., D.Z., J.R.).) S Silvia Ravaro (IRCCS, Istituto Auxologico Italiano, Department of Cardiology, Cardiomyopathy Unit, Milan, Italy (S.R., L. Crotti).) L Lia Crotti (Department of Medicine and Surgery, University of Milano-Bicocca, Milan, Italy (L.C.).) S Sven Dittmann (Department of Cardiovascular Medicine, Institute for Genetics of Heart Diseases, University Hospital Münster, Germany (S.D., E.-S.B.).) E Eric Schulze-Bahr (Department of Cardiovascular Medicine, Institute for Genetics of Heart Diseases, University Hospital Münster, Germany (S.D., E.-S.B.).) E Eric D. Carruth (Department of Genomic Health, Geisinger, Danville, PA (E.D.C.).) V Vikki A. Krysov (Department of Medicine, Division of Cardiovascular Medicine, Stanford Center for Inherited Cardiovascular Disease, Stanford University School of Medicine, CA (V.A.K., V.N.P.).) V Victoria N. Parikh (Stanford Center for Inherited Cardiovascular Disease, Department of Medicine, Division of Cardiovascular Medicine, (Y.Y., K.C., D.S., A.F., B.J.F., C.C., L.W., Q.W., J.E.G., Y.H., F.B., R.H.W., A.S., A.T., R.A., M.T.W., M.M., E.A.A., V.N.P.), Stanford School of Medicine, Palo Alto, CA.) G Giulio Conte A Arthur Wilde (Amsterdam UMC location University of Amsterdam, Department of Cardiology, the Netherlands (A.W.).) J J. Peter van Tintelen (Division of Cardiology, University Medical Center Utrecht, the Netherlands (S.A.M., J.P.v.T., A.S.J.M.t.R.).) A Anneline S.J.M. te Riele (Division of Cardiology, University Medical Center Utrecht, the Netherlands (S.A.M., J.P.v.T., A.S.J.M.t.R.).) G Gianfranco Sinagra L Luisa Mestroni (Department of Medicine, Adult Medical Genetics Program, University of Colorado Anschutz Medical Campus, Aurora, CO, USA.) M Matthew Taylor (University of Colorado, Anschutz, Medical Center, Aurora) M Marco Merlo L Luigi Adamo H Hugh Calkins (Johns Hopkins University, Baltimore) B Barbara Bauce (Department of Cardiac, Thoracic, Vascular Sciences and Public Health, University of Padua, Italy (K.P., C.B., B.B.).) E Elena Arbelo (Arrhythmia Section, Department of Cardiology, Institut Clínic Cardiovascular (ICCV), Hospital Clínic de Barcelona, Universitat de Barcelona & Institut d’Investigacions Biomèdiques August Pi i Sunyer, Barcelona, Catalunya, Spain (I.R.-L, P.G., S.V.-C., J.T.O-P, J.-B.G., M.R.-C., E.G., J.-M.T., E.A., P.S.-S., L.Q., R.B., R.D., M.N., J.B., L.M., A.P.-S.).) P Perry M. Elliott (Institute of Cardiovascular Science, University College London, United Kingdom (A.P., I.H., P.S., P.M.E.).) E Estelle Gandjbakhch (Sorbonne Université, AP-HP, IHU-ICAN, Groupe Hospitalier Pitié-Salpêtrière, Institut de Cardiologie, Paris, France (M.L., P.-Y.T., P.C., F.A., E.G.).) N Neal Lakdawala (Brigham and Women's Hospital, Boston, Massachusetts, United States) A Adam Helms (UNIVERSITY OF MICHIGAN, Ann Arbor, Michigan, United States) C Cynthia A. James (Department of Medicine, Division of Cardiology, Johns Hopkins University, Baltimore, MD (A.G., C.A.J., H.C., N.A.G.).) N Nisha A. Gilotra (Department of Medicine, Division of Cardiology, Johns Hopkins University, Baltimore, MD (A.G., C.A.J., H.C., N.A.G.).)

Abstract

BACKGROUND: Inflammatory, myocarditis-like episodes precede and are associated with higher risk of sustained ventricular arrhythmias and heart failure in patients with pathogenic or likely pathogenic desmoplakin (DSP) variants. Whether the recurrence and treatment of myocarditis-like episodes influence the outcomes in this population is unknown. This study aimed to assess the prognostic impact of the recurrence and treatment of myocarditis-like episodes in patients with pathogenic or likely pathogenic DSP variants. METHODS: The study was designed as an observational cohort study using all patients with pathogenic or likely pathogenic DSP variants in the DSP -ERADOS Network ( Desmopakin Specific Effort for a Rare Disease Outcome Study) enrolled at 31 institutions up until April 30, 2024. Survival from ventricular arrhythmia and heart failure end points and recurrent myocarditis-like episodes was evaluated for both first and recurrent documented myocarditis-like episodes and the impact of immunosuppressive treatment on outcomes assessed. RESULTS: A total of 1014 patients with pathogenic or likely pathogenic DSP variants (62.4% female; mean age, 40.4±17.4 years; 47.1% probands) were included. Among them, 177 individuals (17.5%) experienced ≥1 documented myocarditis-like episode, with 63 of them (35.6%) receiving immunosuppressive treatment. Immunosuppressive treatment of the first documented myocarditis-like episode was associated with reduced risk of ventricular arrhythmia and heart failure outcomes (hazard ratio, 0.18 [95% CI, 0.07–0.45]; P <0.001; and hazard ratio, 0.09 [95% CI, 0.02–0.39; P =0.001, respectively) over a median follow-up of 6.4 years (95% CI, 4.0–10.5). This risk was comparable to that of patients with no history of myocarditis-like episode but did not correlate with a reduction in recurrent episodes after completion of initial immunosuppression (hazard ratio, 0.85 [95% CI, 0.47–1.54]; P =0.599). In contrast, nonsteroidal anti-inflammatory drugs or colchicine treatment did not influence outcomes. CONCLUSIONS: Immunosuppressive treatment of myocarditis-like episodes in DSP patients was associated with improved combined ventricular arrhythmia or heart failure outcomes, supporting future prospective evaluation in DSP cohorts.

Article Details

Journal Circulation
Volume / Issue Vol. 152, Issue 14
Published October 07, 2025
Pages 978-989
ISSN 0009-7322
Publisher Lippincott Williams & Wilkins

Journal Info

Circulation

Lippincott Williams & Wilkins

ISSN: 0009-7322 Health Sciences

Authors (66)

A

Alessio Gasperetti

S

Steven A. Muller

Department of Medicine, Division of Cardiology, Johns Hopkins University School of Medicine, Baltimore, MD (A.G., S.A.M., B.A., R.T.C., B.M., C. Tichnell, P.S., L.A., H.C., C.A.J., N.A.G.).

G

Giovanni Peretto

Multidisciplinary Disease Unit for Myocarditis and Arrhythmogenic Cardiomyopathies, Istituto di Ricovero e Cura a Carattere Scientifico San Raffaele Scientific Institute, Milan, Italy (G.P.).

B

Babken Asatryan

Department of Medicine, Division of Cardiology, Johns Hopkins University School of Medicine, Baltimore, MD (A.G., S.A.M., B.A., R.T.C., B.M., C. Tichnell, P.S., L.A., H.C., C.A.J., N.A.G.).

A

Alexandros Protonotarios

Institute of Cardiovascular Science, University College London, United Kingdom (A.P., I.H., P.S., P.M.E.).

M

Mikael Laredo

Sorbonne Université, AP-HP, IHU-ICAN, Groupe Hospitalier Pitié-Salpêtrière, Institut de Cardiologie, Paris, France (M.L., P.-Y.T., P.C., F.A., E.G.).

P

Pierre-Yves Tarlet

Sorbonne Université, AP-HP, IHU-ICAN, Groupe Hospitalier Pitié-Salpêtrière, Institut de Cardiologie, Paris, France (M.L., P.-Y.T., P.C., F.A., E.G.).

P

Petros Syrris

Institute of Cardiovascular Science, University College London, United Kingdom (A.P., I.H., P.S., P.M.E.).

R

Richard T. Carrick

Department of Medicine, Division of Cardiology, Johns Hopkins University School of Medicine, Baltimore, MD (A.G., S.A.M., B.A., R.T.C., B.M., C. Tichnell, P.S., L.A., H.C., C.A.J., N.A.G.).

B

Brittney Murray

Department of Medicine, Division of Cardiology, Johns Hopkins University School of Medicine, Baltimore, MD (A.G., S.A.M., B.A., R.T.C., B.M., C. Tichnell, P.S., L.A., H.C., C.A.J., N.A.G.).

C

Crystal Tichnell

Department of Medicine, Division of Cardiology, Johns Hopkins University School of Medicine, Baltimore, MD (A.G., S.A.M., B.A., R.T.C., B.M., C. Tichnell, P.S., L.A., H.C., C.A.J., N.A.G.).

P

Paul Scheel

Department of Medicine, Division of Cardiology, Johns Hopkins University School of Medicine, Baltimore, MD (A.G., S.A.M., B.A., R.T.C., B.M., C. Tichnell, P.S., L.A., H.C., C.A.J., N.A.G.).

M

Marta Gigli

Cardiothoracovascular Department, Division of Cardiology, Azienda Sanitaria Universitaria Giuliano Isontina and University of Trieste, Italy (M.G., G.S., M.M.).

S

Sing-Chien Yap

Erasmus MC, Rotterdam, Netherlands

K

Kalliopi Pilichou

C

Cristina Basso

K

Kristen Medo

University of Colorado Cardiovascular Institute, University of Colorado Anschutz Medical Campus, Aurora (K.M., M.J., L.M., M.T.).

M

Max Jason

University of Colorado Cardiovascular Institute, University of Colorado Anschutz Medical Campus, Aurora (K.M., M.J., L.M., M.T.).

V

Valentina A. Rossi

A

Ardan M. Saguner

Department of Cardiology, Arrhythmia Unit, University Heart Center, University Hospital Zurich, Switzerland (V.A.R.., A.M.S., F.D.).

F

Firat Duru

D

Dominic Abrams

Boston Children's Hospital, Boston, Massachusetts, United States

J

Julia Cadrin-Tourigny

Research Center (S.S., P.J., S.G., I.H.-C., A.F., N.E.I., N.B., M.A., K.D., P.G.G., P.K., L.M., B.M., A.M.P., L.R., D.R., B.T., J.-C.T., J.C.-T., A.R.-P., R.T.), Montreal Heart Institute, QC, Canada.

M

Mattia Targetti

University of Colorado Cardiovascular Institute, University of Colorado Anschutz Medical Campus, Aurora (K.M., M.J., L.M., M.T.).

M

Maurizio Pieroni

Department of Experimental and Clinical Medicine, University of Florence, Meyer Children Hospital and Careggi University Hospital, Italy (M.P.).

M

Maddalena Graziosi

Cardiac Thoracic and Vascular Department, Cardiology Unit, IRCCS Azienda Ospedaliero-Universitaria di Bologna, Italy (M.G., E.B.).

E

Elena Biagini

Cardiac Thoracic and Vascular Department, Cardiology Unit, IRCCS Azienda Ospedaliero-Universitaria di Bologna, Italy (M.G., E.B.).

P

Philippe Charron

Sorbonne Université, AP-HP, IHU-ICAN, INSERM 1166, Hôpital Universitaire Pitié-Salpêtrière, Paris, France

M

Moniek Cox

Department of Cardiology, University Medical Centre Groningen, the Netherlands (M. Cox).

M

Michela Casella

C

Claudio Tondo

J

James S. Ware

S

Sanjay K. Prasad

CMR Unit, Royal Brompton and Harefield Hospitals, Part of Guy’s and St Thomas’ NHS Foundation Trust, London, UK (S.K.P.).

L

Leonardo Calò

Department of Cardiology, Policlinico Casilino, Rome, Italy (L. Calò).

E

Eric Smith

J

Jodie Ingles

H

Harikrishna Tandri

Department of Medicine, Division of Cardiology, Vanderbilt University Medical Center, Nashville, TN (H.T.).

F

Flavie Ader

Sorbonne Université, AP-HP, IHU-ICAN, Groupe Hospitalier Pitié-Salpêtrière, Institut de Cardiologie, Paris, France (M.L., P.-Y.T., P.C., F.A., E.G.).

S

Stacey Peters

Royal Melbourne Hospital, Melbourne, Victoria, Australia (S.P., D.Z., J.R.).

D

Dominica Zentner

Royal Melbourne Hospital, Melbourne, Victoria, Australia (S.P., D.Z., J.R.).

J

Jeremy Russo

Royal Melbourne Hospital, Melbourne, Victoria, Australia (S.P., D.Z., J.R.).

S

Silvia Ravaro

IRCCS, Istituto Auxologico Italiano, Department of Cardiology, Cardiomyopathy Unit, Milan, Italy (S.R., L. Crotti).

L

Lia Crotti

Department of Medicine and Surgery, University of Milano-Bicocca, Milan, Italy (L.C.).

S

Sven Dittmann

Department of Cardiovascular Medicine, Institute for Genetics of Heart Diseases, University Hospital Münster, Germany (S.D., E.-S.B.).

E

Eric Schulze-Bahr

Department of Cardiovascular Medicine, Institute for Genetics of Heart Diseases, University Hospital Münster, Germany (S.D., E.-S.B.).

E

Eric D. Carruth

Department of Genomic Health, Geisinger, Danville, PA (E.D.C.).

V

Vikki A. Krysov

Department of Medicine, Division of Cardiovascular Medicine, Stanford Center for Inherited Cardiovascular Disease, Stanford University School of Medicine, CA (V.A.K., V.N.P.).

V

Victoria N. Parikh

Stanford Center for Inherited Cardiovascular Disease, Department of Medicine, Division of Cardiovascular Medicine, (Y.Y., K.C., D.S., A.F., B.J.F., C.C., L.W., Q.W., J.E.G., Y.H., F.B., R.H.W., A.S., A.T., R.A., M.T.W., M.M., E.A.A., V.N.P.), Stanford School of Medicine, Palo Alto, CA.

G

Giulio Conte

A

Arthur Wilde

Amsterdam UMC location University of Amsterdam, Department of Cardiology, the Netherlands (A.W.).

J

J. Peter van Tintelen

Division of Cardiology, University Medical Center Utrecht, the Netherlands (S.A.M., J.P.v.T., A.S.J.M.t.R.).

A

Anneline S.J.M. te Riele

Division of Cardiology, University Medical Center Utrecht, the Netherlands (S.A.M., J.P.v.T., A.S.J.M.t.R.).

G

Gianfranco Sinagra

L

Luisa Mestroni

Department of Medicine, Adult Medical Genetics Program, University of Colorado Anschutz Medical Campus, Aurora, CO, USA.

M

Matthew Taylor

University of Colorado, Anschutz, Medical Center, Aurora

M

Marco Merlo

L

Luigi Adamo

H

Hugh Calkins

Johns Hopkins University, Baltimore

B

Barbara Bauce

Department of Cardiac, Thoracic, Vascular Sciences and Public Health, University of Padua, Italy (K.P., C.B., B.B.).

E

Elena Arbelo

Arrhythmia Section, Department of Cardiology, Institut Clínic Cardiovascular (ICCV), Hospital Clínic de Barcelona, Universitat de Barcelona & Institut d’Investigacions Biomèdiques August Pi i Sunyer, Barcelona, Catalunya, Spain (I.R.-L, P.G., S.V.-C., J.T.O-P, J.-B.G., M.R.-C., E.G., J.-M.T., E.A., P.S.-S., L.Q., R.B., R.D., M.N., J.B., L.M., A.P.-S.).

P

Perry M. Elliott

Institute of Cardiovascular Science, University College London, United Kingdom (A.P., I.H., P.S., P.M.E.).

E

Estelle Gandjbakhch

Sorbonne Université, AP-HP, IHU-ICAN, Groupe Hospitalier Pitié-Salpêtrière, Institut de Cardiologie, Paris, France (M.L., P.-Y.T., P.C., F.A., E.G.).

N

Neal Lakdawala

Brigham and Women's Hospital, Boston, Massachusetts, United States

A

Adam Helms

UNIVERSITY OF MICHIGAN, Ann Arbor, Michigan, United States

C

Cynthia A. James

Department of Medicine, Division of Cardiology, Johns Hopkins University, Baltimore, MD (A.G., C.A.J., H.C., N.A.G.).

N

Nisha A. Gilotra

Department of Medicine, Division of Cardiology, Johns Hopkins University, Baltimore, MD (A.G., C.A.J., H.C., N.A.G.).