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Making sense of congenital cardiac disease with a research database: The Congenital Heart Surgeons’ Society Data Center*

Part of: The International Society for Nomenclature of Paediatric and Congenital Heart Disease (ISNPCHD)

Published online by Cambridge University Press:  01 December 2008

Edward J. Hickey ,
Brian W. McCrindle ,
Christopher A. Caldarone ,
William G. Williams  and
Eugene H. Blackstone
Edward J. Hickey*
Affiliation:
The Congenital Heart Surgeons’ Society Data Center, Toronto, Ontario, Canada
Brian W. McCrindle
Affiliation:
The Congenital Heart Surgeons’ Society Data Center, Toronto, Ontario, Canada
Christopher A. Caldarone
Affiliation:
The Congenital Heart Surgeons’ Society Data Center, Toronto, Ontario, Canada
William G. Williams
Affiliation:
The Congenital Heart Surgeons’ Society Data Center, Toronto, Ontario, Canada
Eugene H. Blackstone
Affiliation:
Thoracic and Cardiovascular Surgery, The Cleveland Clinic, Cleveland, Ohio, United States of America
*
Correspondence to: Dr Edward J. Hickey, John Kirklin Fellow, The Congenital Heart Surgeons’ Society Data Center, The Hospital for Sick Children, Room 4431, 555 University Avenue, Toronto, Ontario M5G 1x8, Canada. Tel: +1 416 813 5184; Fax: +1 416 813 8776; E-mail: hickeydoc@yahoo.com
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Abstract

Background

Challenges inherent in researching rare congenital cardiac lesions led to creation of the Congenital Heart Surgeons’ Society Data Center (Data Center) two decades ago. The Data Center pools experiences from up to 60 institutions, and over 4,700 children have been prospectively recruited within nine diagnostic inception cohorts. This report describes the operations of our research database, with particular focus on analytic strategies employed.

Methods and results

A procedural log is created of all investigations and interventions, and reports from enrolling institutions are subsequently obtained. Cross-sectional follow-up is undertaken annually by the Data Center. All data are linked to the individual child, and quality control mechanisms ensure that completeness and accuracy are maximised. Specific advantages of Data Center analytic approaches include multi-phase parametric hazard analysis, re-sampling techniques for reliable risk factor identification, competing risks methodology, and propensity-adjusted comparisons. Virtues of applying these techniques to a research database are illustrated by clinically pertinent questions that have been addressed in place of what would be difficult through randomised trials.

Conclusions

The Data Center is a cost-effective, versatile tool for researching congenital cardiac surgical outcomes. Research databases are ideally suited to in-depth investigations of survival and functional outcomes. Multi-center propensity-adjusted analyses represent efficient surrogates for randomised trials. Well-designed observational prospective studies should remain a principle mode of researching congenital cardiac disease.

Keywords

Analysis of time-related eventsparametriccompeting risksbootstrap baggingresearch database
Type
Original Article
Information
Cardiology in the Young , Volume 18 , Issue S2: Databases and the assessment of complications associated with the treatment of patients with congenital cardiac disease , December 2008 , pp. 152 - 162
Copyright
Copyright © Cambridge University Press 2008

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Footnotes

*

This manuscript was presented at the Inaugural Meeting of The World Society for Pediatric and Congenital Heart Surgery in Washington DC, United States of America, May 3 and 4, 2007.

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