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Comparative Study
. 2010 Dec;160(6):1099-104.
doi: 10.1016/j.ahj.2010.08.010.

Linking clinical registry data with administrative data using indirect identifiers: implementation and validation in the congenital heart surgery population

Sara K Pasquali  1 , Jeffrey P Jacobs, Gregory J Shook, Sean M O'Brien, Matthew Hall, Marshall L Jacobs, Karl F Welke, J William Gaynor, Eric D Peterson, Samir S Shah, Jennifer S Li
Affiliations
Comparative Study

Linking clinical registry data with administrative data using indirect identifiers: implementation and validation in the congenital heart surgery population

Sara K Pasquali et al. Am Heart J. 2010 Dec.

Abstract

Background: The use of clinical registries and administrative data sets in pediatric cardiovascular research has become increasingly common. However, this approach is limited by relatively few existing datasets, each of which contain limited data, and do not communicate with one another. We describe the implementation and validation of methodology using indirect patient identifiers to link The Society of Thoracic Surgeons Congenital Heart Surgery (STS-CHS) Database to The Pediatric Health Information Systems (PHIS) Database (a pediatric administrative database).

Methods: Centers submitting data to STS-CHS and PHIS during 2004 to 2008 were included (n=30). Both data sets were limited to patients 0 to 18 years old undergoing cardiac surgery. An exact match was defined as an exact match on each of the following: date of birth, date of admission, date of discharge, sex, and center. Likely matches were defined as an exact match for all variables except ±1 day for one of the date variables.

Results: Of 45,830 STS-CHS records, 87.4% matched to PHIS using the exact match criteria and 90.3% using the exact or likely match criteria. Validation in a subset of patients revealed that 100% of exact and likely matches were true matches.

Conclusions: This analysis demonstrates that indirect identifiers can be used to create high-quality link between a clinical registry and administrative data set in the congenital heart surgery population. This methodology, which can also be applied to other data sets, allows researchers to capitalize on the strengths of both types of data and expands the pool of data available to answer important clinical questions.

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Figures

Figure 1
Figure 1
Proportion matched between datasets by center (n=30)
See this image and copyright information in PMC

References

    1. Sanders SP. Conducting pediatric cardiovascular trials. Am Heart J. 2001;142:218–223. - PubMed
    1. Johnson JN, Jaggers J, Li S, O'Brien SM, Li JS, Jacobs JP, Jacobs ML, Welke KF, Peterson ED, Pasquali SK. Center variation and outcomes associated with delayed sternal closure following stage 1 palliation for hypoplastic left heart syndrome. J Thorac and Cardiovasc Surg. 2010 Feb 16; [Epub ahead of print] - PMC - PubMed
    1. Karamlou T, Diggs BS, Person T, Ungerleider RM, Welke KF. National practice patterns for management of adult congenital heart disease: operation by pediatric heart surgeons decreases in-hospital death. Circulation. 2008;118:2345–2352. - PubMed
    1. Hirsch JC, Gurney JG, Donohue JE, Gebremariam A, Bove EL, Ohye RG. Hospital mortality for Norwood and arterial switch operations as a function of institutional volume. Pediatr Cardiol. 2008;29:713–717. - PubMed
    1. Curzon CL, Milford-Beland S, Li JS, O'Brien SM, Jacobs JP, Jacobs ML, Welke KF, Lodge AJ, Peterson ED, Jaggers J. Cardiac surgery in infants with low birth weight is associated with increased mortality: analysis of the Society of Thoracic Surgeons Congenital Heart Database. J Thorac Cardiovasc Surg. 2008;135:546–551. - PubMed

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