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Summary of the 2015 International Paediatric Heart Failure Summit of Johns Hopkins All Children’s Heart Institute

  • Jeffrey P. Jacobs (a1) (a2), James A. Quintessenza (a1) (a2), Tom R. Karl (a1) (a2) (a3), Alfred Asante-Korang (a1) (a2), Allen D. Everett (a1) (a2), Susan B. Collins (a1) (a2), Genaro A. Ramirez-Correa (a2), Kristin M. Burns (a4), Mitchell Cohen (a5), Steven D. Colan (a6), John M. Costello (a7), Kevin P. Daly (a6), Rodney C. G. Franklin (a8), Charles D. Fraser (a9), Kevin D. Hill (a10), James C. Huhta (a11) (a12), Sunjay Kaushal (a13), Yuk M. Law (a14), Steven E. Lipshultz (a15), Anne M. Murphy (a2), Sara K. Pasquali (a16), Mark R. Payne (a17), Joseph Rossano (a18), Girish Shirali (a19), Stephanie M. Ware (a20), Mingguo Xu (a2) (a21) and Marshall L. Jacobs (a1) (a2)...


In the United States alone, ∼14,000 children are hospitalised annually with acute heart failure. The science and art of caring for these patients continues to evolve. The International Pediatric Heart Failure Summit of Johns Hopkins All Children’s Heart Institute was held on February 4 and 5, 2015. The 2015 International Pediatric Heart Failure Summit of Johns Hopkins All Children’s Heart Institute was funded through the Andrews/Daicoff Cardiovascular Program Endowment, a philanthropic collaboration between All Children’s Hospital and the Morsani College of Medicine at the University of South Florida (USF). Sponsored by All Children’s Hospital Andrews/Daicoff Cardiovascular Program, the International Pediatric Heart Failure Summit assembled leaders in clinical and scientific disciplines related to paediatric heart failure and created a multi-disciplinary “think-tank”. The purpose of this manuscript is to summarise the lessons from the 2015 International Pediatric Heart Failure Summit of Johns Hopkins All Children’s Heart Institute, to describe the “state of the art” of the treatment of paediatric cardiac failure, and to discuss future directions for research in the domain of paediatric cardiac failure.


Corresponding author

Correspondence to: J. P. Jacobs, MD, FACS, FACC, FCCP, Professor of Surgery, Johns Hopkins University; Chief, Division of Cardiovascular Surgery, Director, Andrews/Daicoff Cardiovascular Program, and Surgical Director of Heart Transplantation and Extracorporeal Life Support Programs, Johns Hopkins All Children’s Heart Institute, All Children’s Hospital and Florida Hospital for Children. 601 Fifth Street South, Suite 607, Saint Petersburg, Florida 33701, United States of America. Tel: +727 767 6666; Fax: +727 767 8606; E-mail:


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1. Centers for Disease Control and Prevention. Congenital Heart Defects Data and Statistics. Retrieved April 6, 2015, from
2. Hoffman, JL, Kaplan, S. The incidence of congenital heart disease. J Am Coll Cardiol 2002; 39: 18901900.
3. Hoffman, JI, Kaplan, S, Liberthson, RR. Prevalence of congenital heart disease. Am Heart J 2004; 147: 425439.
4. Hoffman, JIe. The global burden of congenital heart disease. Cardiovasc J Afr 2013; 24: 141145.
5. Jacobs, JP, Jacobs, ML, Mavroudis, C, Tchervenkov, CI, Pasquali, SK. Executive Summary: The Society of Thoracic Surgeons Congenital Heart Surgery Database – Twenty-first Harvest – (July 1, 2010–June 30, 2014). The Society of Thoracic Surgeons (STS) and Duke Clinical Research Institute (DCRI), Duke University Medical Center, Durham, North Carolina, United States, 2014 Harvest.
6. Rossano, JW, Kim, JJ, Decker, JA, et al. Prevalence, morbidity, and mortality of heart failure-related hospitalizations in children in the United States: a population-based study. J Card Fail 2012; 18: 459470.
7. Andrews, RE, Fenton, MJ, Ridout, DA, Burch, M. New-onset heart failure due to heart muscle disease in childhood: a prospective study in the United Kingdom and Ireland. Circulation 2008; 117: 7984.
8. Chronic Heart Failure: National Clinical Guideline for Diagnosis and Management in Primary and Secondary Care: Partial Update. Retrieved April 6, 2015, from
9. Cleveland Clinic. Heart failure – definition and etiology. Retrieved April 6, 2015, from
10. McMurray, JJ, Adamopoulos, S, Anker, SD, et al. ESC guidelines for the diagnosis and treatment of acute and chronic heart failure 2012: the task force for the diagnosis and treatment of acute and chronic heart failure 2012 of the European Society of Cardiology. Developed in collaboration with the Heart Failure Association (HFA) of the ESC. Eur Heart J 2012; 33: 17871847.
11. Maron, BJ, Towbin, JA, Thiene, G, et al. Contemporary definitions and classification of the cardiomyopathies: an American Heart Association Scientific Statement from the Council on Clinical Cardiology, Heart Failure and Transplantation Committee; Quality of Care and Outcomes Research and Functional Genomics and Translational Biology Interdisciplinary Working Groups; and Council on Epidemiology and Prevention. Circulation 2006; 113: 18071816.
12. Elliott, P, Andersson, B, Arbustini, E, et al. Classification of the cardiomyopathies: a position statement from the European Society Of Cardiology Working Group on Myocardial and Pericardial Diseases. Eur Heart J 2008; 29: 270276.
13. Arbustini, E, Narula, N, Tavazzi, L, et al. The MOGE(S) classification of cardiomyopathy for clinicians. J Am Coll Cardiol 2014; 64: 304318.
14. Ackerman, MJ, Priori, SG, Willems, S, et al. HRS/EHRA expert consensus statement on the state of genetic testing for the channelopathies and cardiomyopathies this document was developed as a partnership between the Heart Rhythm Society (HRS) and the European Heart Rhythm Association (EHRA). Heart Rhythm 2011; 8: 13081339.
15. Bos, JM, Towbin, JA, Ackerman, MJ. Diagnostic, prognostic, and therapeutic implications of genetic testing for hypertrophic cardiomyopathy. J Am Coll Cardiol 2009; 54: 201211.
16. Charron, P, Arad, M, Arbustini, E, et al. Genetic counselling and testing in cardiomyopathies: a position statement of the European Society of Cardiology Working Group on Myocardial and Pericardial Diseases. Eur Heart J 2010; 31: 27152726.
17. Watkins, H, Ashrafian, H, Redwood, C. Inherited cardiomyopathies. N Engl J Med 2011; 364: 16431656.
18. Van Langen, I, Arens, Y, Baars, H, et al. Genetic diagnostics and genetic counselling in hypertrophic cardiomyopathy (HCM). Neth Heart J 2010; 18: 144159.
19. Miller, EM, Wang, Y, Ware, SM. Uptake of cardiac screening and genetic testing among hypertrophic and dilated cardiomyopathy families. J Genet Couns 2013; 22: 258267.
20. National Cancer Institute at the National Institutes of Health (NIH). NCI Dictionary of Cancer Terms. Retrieved April 29, 2015, from
21. Institute of Medicine (IOM) (US). Committee on Qualification of Biomarkers and Surrogate Endpoints in Chronic Disease. In: Micheel, CM, Ball, JR (eds). Evaluation of Biomarkers and Surrogate Endpoints in Chronic Disease. National Academies Press (US), Washington (DC), 2010.
22. Kaushal, S, Jacobs, JP, Gossett, JG, et al. Innovation in basic science: stem cells and their role in the treatment of paediatric cardiac failure – opportunities and challenges. Supplement to Cardiology in the Young: Annual Heart Week in Florida Supplement Number 7 – Innovation Associated with the Treatment of Patients with Congenital and Pediatric Cardiac Disease Cardiol Young 2009, Suppl 2 7484.
23. Fraisse, A, Le Bel, S, Mas, B, Macrae, D. Paediatric cardiac intensive care unit: current setting and organization in 2010. Arch Cardiovasc Dis 2010; 103: 546551.
24. Checchia, PA, Laussen, PC. The cardiac intensive care unit perspective on hemodynamic monitoring of oxygen transport balance. Pediatr Crit Care Med 2011; 12 (Suppl): S69S71.
25. Tibby, SM, Murdoch, IA. Monitoring cardiac function in intensive care. Arch Dis Child 2003; 88: 4652.
26. Bronicki, RA, Anas, NG. Cardiopulmonary interaction. Pediatr Crit Care Med 2009; 10: 313322.
27. Gaies, M, Cooper, DS, Tabbutt, S, et al. Collaborative quality improvement in the cardiac intensive care unit: development of the Paediatric Cardiac Critical Care Consortium (PC4). Cardiol Young 2015; 25: 951957, doi: 10.1017/S1047951114001450. Epub 2014 Aug 28. PMID: 25167212.
28. Almond, CS, Morales, DL, Blackstone, EH, et al. Berlin Heart EXCOR pediatric ventricular assist device for bridge to heart transplantation in US children. Circulation 2013; 127: 17021711.
29. Jaquiss, RD, Bronicki, RA. An overview of mechanical circulatory support in children. Pediatr Crit Care Med 2013; 14 (Suppl 1): S3S6.
30. Smith, AH, Laussen, PC. Cardiac critical care: what really makes a difference. Curr Opin Pediatr 2013 25: 567573. doi: 10.1097/MOP.0b013e328364d5e6.
31. Grenier, MA, Osganian, SK, Cox, GF, et al. Design and implementation of the North American Pediatric Cardiomyopathy Registry. Am Heart J 2000; 139: S86S95.
32. Nugent, AW, Daubeney, PE, Chondros, P, et al. The epidemiology of childhood cardiomyopathy in Australia. N Engl J Med 2003; 348: 16391646.
33. Towbin, JA, Lowe, AM, Colan, SD, et al. Incidence, causes, and outcomes of dilated cardiomyopathy in children. JAMA 2006; 296: 18671876.
34. Alvarez, JA, Orav, EJ, Wilkinson, JD, et al. Competing risks for death and cardiac transplantation in children with dilated cardiomyopathy: results from the pediatric cardiomyopathy registry. Circulation 2011; 124: 814823.
35. Everitt, MD, Sleeper, LA, Lu, M, et al. Recovery of echocardiographic function in children with idiopathic dilated cardiomyopathy: results from the pediatric cardiomyopathy registry. J Am Coll Cardiol 2014; 63: 14051413.
36. Alexander, PM, Daubeney, PE, Nugent, AW, et al. Long-term outcomes of dilated cardiomyopathy diagnosed during childhood: results from a national population-based study of childhood cardiomyopathy. Circulation 2013; 128: 20392046.
37. Colan, SD, Shirali, G, Margossian, R, et al. The Ventricular Volume Variability study of the Pediatric Heart Network: study design and impact of beat averaging and variable type on the reproducibility of echocardiographic measurements in children with chronic dilated cardiomyopathy. J Am Soc Echocardiogr 2012; 25: 842.e6854.e6.
38. Molina, KM, Shrader, P, Colan, SD, et al. Predictors of disease progression in pediatric dilated cardiomyopathy. Circ Heart Fail 2013; 6: 12141222.
39. Margossian, R, Chen, S, Sleeper, LA, et al. The reproducibility and absolute values of echocardiographic measurements of left ventricular size and function in children are algorithm dependent. J Am Soc Echocardiogr 2015; 28: 549.e1558.e1.
40. Nanda, NC, Kisslo, J, Lang, R, et al. Examination protocol for three-dimensional echocardiography. Echocardiography 2004; 21: 763768.
41. Corsi, C, Lang, RM, Veronesi, F, et al. Volumetric quantification of global and regional left ventricular function from real-time three-dimensional echocardiographic images. Circulation 2005; 112: 11611170.
42. Lang, RM, Badano, LP, Mor-Avi, V, et al. Recommendations for cardiac chamber quantification by echocardiography in adults: an update from the American Society of Echocardiography and the European Association of Cardiovascular Imaging. J Am Soc Echocardiogr 2015; 28: 1.e1439.e14.
43. Friedberg, MK, Su, X, Tworetzky, W, Soriano, BD, Powell, AJ, Marx, GR. Validation of 3D echocardiographic assessment of left ventricular volumes, mass, and ejection fraction in neonates and infants with congenital heart disease: a comparison study with cardiac MRI. Circ Cardiovasc Imaging 2010; 3: 735742.
44. Dipchand, AI, Edwards, LB, Kucheryavaya, AY, et al. The registry of the International Society for Heart and Lung Transplantation: seventeenth official pediatric heart transplantation report – 2014; focus theme: retransplantation. J Heart Lung Transplant 2014; 33: 985995.
45. Webber, S, Rogers, J. OPTN/UNOS Thoracic Organ Transplantation Committee Report to the Board of Directors. 2014: June 23–24.
46. Jacobs, JP, Quintessenza, JA, Boucek, RJ, et al. Pediatric cardiac transplantation in children with high panel reactive antibody. Ann Thorac Surg 2004; 78: 17031709.
47. Holt, DB, Lublin, DM, Phelan, DL, et al. Mortality and morbidity in pre-sensitized pediatric heart transplant recipients with a positive donor crossmatch utilizing peri-operative plasmapheresis and cytolytic therapy. J Heart Lung Transplant 2007; 26: 876882.
48. Jacobs, JP, Asante-Korang, A, O’Brien, SM, et al. Lessons learned from 119 consecutive cardiac transplants for pediatric and congenital heart disease. Ann Thorac Surg 2011; 91: 12481255.
49. Asante-Korang, A, Jacobs, JP, Ringewald, J, et al. Management of children undergoing cardiac transplantation with high Panel Reactive Antibodies. Supplement to Cardiology in the Young: Annual Heart Week in Florida Supplement Number 9 – Hypoplastic Left Heart Syndrome And Other Challenges Related To Pediatric And Congenital Cardiac Disease: An Interdisciplinary Approach. Cardiol Young. 2011; 21 (Suppl 2): 1–176. Cardiol Young 2011; 21 (Suppl 2): 124132.
50. Asante-Korang, A, Amankwah, EK, Lopez-Cepero, M, et al. Outcomes in highly sensitized pediatric heart transplant patients using current management strategies. J Heart Lung Transplant 2015; 34: 175181.
51. Feingold, B, Webber, SA, Bryce, CL. Comparison of listing strategies for allosensitized heart transplant candidates requiring transplant at high urgency: a decision model analysis. Am J Transplant 2015; 15: 427435.
52. De Vlaminck, I, Valantine, HA, Snyder, TM, et al. Circulating cell-free DNA enables noninvasive diagnosis of heart transplant rejection. Sci Transl Med 2014; 6: 241277.
53. Daly, K, Stack, M, Eisenga, M, et al. VEGF-A predicts the development of moderate or severe cardiac allograft vasculopathy in pediatric heart transplant recipients. Am J Transplant 2014; 14: 45.
54. Felker, GM 1, Maisel, AS. A global rank end point for clinical trials in acute heart failure. Circ Heart Fail 2010; 3: 643646.
55. Fröbert, O, Lagerqvist, B, Olivecrona, GK, et al. Thrombus aspiration during ST-segment elevation myocardial infarction. N Engl J Med 2013; 369: 15871597.
56. Lauer, MS, D’Agostino, RB Sr. The randomized registry trial – the next disruptive technology in clinical research? N Engl J Med 2013; 369: 15791581.



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