Clinical InvestigationValvular and Congenital Heart DiseaseLinking clinical registry data with administrative data using indirect identifiers: Implementation and validation in the congenital heart surgery population
Section snippets
Data sources
The STS-CHS Database is the largest existing clinical congenital heart surgery data registry in the world. It currently contains data on >140,000 surgeries conducted since 1998 performed at 85 US centers in 37 states. This represents nearly three quarters of all US centers performing congenital heart surgery.12 The STS-CHS Database contains perioperative and operative data on all patients undergoing congenital heart surgery at participating centers, including demographic information, anatomical
Data link
Using method 1, 45,830 STS-CHS records and 211,973 PHIS records were identified (Table II). Broadening the initial inclusion criteria used to define the PHIS cardiac population (methods 2 and 3) was not associated with a greater match but was associated with a greater number of duplicates (Table II). Therefore, method 1 was deemed to be the best method with 87.4% exact matches and a total of 90.3% exact or likely matches.
Center variation
The proportion of exact and likely matches at each of the 30 centers is
Discussion
These data demonstrate the feasibility of using indirect identifiers to create a high-quality link between clinical registry and administrative data for patients undergoing congenital heart surgery. This methodology allows researchers to capitalize on the strengths of both data sets and expands the pool of data available for analysis. Similar methodology can also be applied to link other existing data sources.
The use of indirect identifiers to link large data sets has been described previously
Conclusions
This analysis demonstrates that indirect identifiers can be used to create a high-quality link between a clinical registry and administrative data set in the congenital heart surgery population. This will allow several analyses to be performed with linked data from this study, and similar methodology can also be applied to link other data sets. Leveraging these and other linked data will enable researchers to answer important questions regarding practice variation and the efficacy and safety of
Disclosures
This study was supported by National Heart, Lung, and Blood Institute grant 1RC1HL099941-01 under the 2009 American Recovery and Reinvestment Act.
Dr Pasquali receives grant support (KL2 RR024127-02) from the National Center for Research Resources, a component of the National Institutes of Health (NIH) and NIH Roadmap for Medical Research, and from the American Heart Association Mid-Atlantic Affiliate Clinical Research Program. The contents of this publication are solely the responsibility of
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