Design and implementation of the North American Pediatric Cardiomyopathy Registry

M. A. Grenier, S. K. Osganian, G. F. Cox, J. A. Towbin, S. D. Colan, P. R. Lurie, L. A. Sleeper, E. J. Orav, Steven E Lipshultz

Research output: Contribution to journalArticle

88 Citations (Scopus)

Abstract

The Pediatric Cardiomyopathy Registry (PCMR) was established to describe the epidemiologic features and clinical course of selected cardiomyopathies in patients aged 18 years or younger and to promote the development of etiology-specific treatments. Sixty-one private and institutional pediatric cardiomyopathy practices in the United States and Canada were recruited to participate in the PCMR. The registry consists of a prospective, population- based cohort of patients in 2 regions (New England and the Central Southwestern United States) and a retrospective cohort of patients diagnosed between 1991 and 1996. Annual follow-up data are collected on all patients. As of June 1999, the PCMR consisted of 337 prospectively identified and 990 retrospectively identified patients. The PCMR has demonstrated the feasibility of establishing a large database of sociodemographic and clinical information on children with pediatric cardiomyopathy. Through this cooperative effort, the PCMR will obtain precise estimates of the incidence of pediatric cardiomyopathy and a better understanding of the natural history of this disease.

Original languageEnglish
JournalAmerican Heart Journal
Volume139
Issue number2 III
StatePublished - Feb 23 2000
Externally publishedYes

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Cardiomyopathies
Registries
Pediatrics
Southwestern United States
New England
Canada
Databases
Incidence
Population

ASJC Scopus subject areas

  • Cardiology and Cardiovascular Medicine

Cite this

Grenier, M. A., Osganian, S. K., Cox, G. F., Towbin, J. A., Colan, S. D., Lurie, P. R., ... Lipshultz, S. E. (2000). Design and implementation of the North American Pediatric Cardiomyopathy Registry. American Heart Journal, 139(2 III).

Design and implementation of the North American Pediatric Cardiomyopathy Registry. / Grenier, M. A.; Osganian, S. K.; Cox, G. F.; Towbin, J. A.; Colan, S. D.; Lurie, P. R.; Sleeper, L. A.; Orav, E. J.; Lipshultz, Steven E.

In: American Heart Journal, Vol. 139, No. 2 III, 23.02.2000.

Research output: Contribution to journalArticle

Grenier, MA, Osganian, SK, Cox, GF, Towbin, JA, Colan, SD, Lurie, PR, Sleeper, LA, Orav, EJ & Lipshultz, SE 2000, 'Design and implementation of the North American Pediatric Cardiomyopathy Registry', American Heart Journal, vol. 139, no. 2 III.
Grenier MA, Osganian SK, Cox GF, Towbin JA, Colan SD, Lurie PR et al. Design and implementation of the North American Pediatric Cardiomyopathy Registry. American Heart Journal. 2000 Feb 23;139(2 III).
Grenier, M. A. ; Osganian, S. K. ; Cox, G. F. ; Towbin, J. A. ; Colan, S. D. ; Lurie, P. R. ; Sleeper, L. A. ; Orav, E. J. ; Lipshultz, Steven E. / Design and implementation of the North American Pediatric Cardiomyopathy Registry. In: American Heart Journal. 2000 ; Vol. 139, No. 2 III.
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