title: Linking the congenital heart surgery databases of the Society of Thoracic Surgeons and the Congenital Heart Surgeons' Society: part 1--rationale and methodology.
abstract: OBJECTIVE
  The Society of Thoracic Surgeons Congenital Heart Surgery Database (STS-CHSD) is the largest Registry in the world of patients who have undergone congenital and pediatric cardiac surgical operations. The Congenital Heart Surgeons' Society Database (CHSS-D) is an Academic Database designed for specialized detailed analyses of specific congenital cardiac malformations and related treatment strategies. The goal of this project was to create a link between the STS-CHSD and the CHSS-D in order to facilitate studies not possible using either individual database alone and to help identify patients who are potentially eligible for enrollment in CHSS studies.
  
  
  METHODS
  Centers were classified on the basis of participation in the STS-CHSD, the CHSS-D, or both. Five matrices, based on CHSS inclusionary criteria and STS-CHSD codes, were created to facilitate the automated identification of patients in the STS-CHSD who meet eligibility criteria for the five active CHSS studies. The matrices were evaluated with a manual adjudication process and were iteratively refined. The sensitivity and specificity of the original matrices and the refined matrices were assessed.
  
  
  RESULTS
  In January 2012, a total of 100 centers participated in the STS-CHSD and 74 centers participated in the CHSS. A total of 70 centers participate in both and 40 of these 70 agreed to participate in this linkage project. The manual adjudication process and the refinement of the matrices resulted in an increase in the sensitivity of the matrices from 93% to 100% and an increase in the specificity of the matrices from 94% to 98%.
  
  
  CONCLUSIONS
  Matrices were created to facilitate the automated identification of patients potentially eligible for the five active CHSS studies using the STS-CHSD. These matrices have a sensitivity of 100% and a specificity of 98%. In addition to facilitating identification of patients potentially eligible for enrollment in CHSS studies, these matrices will allow (1) estimation of the denominator of patients potentially eligible for CHSS studies and (2) comparison of eligible and enrolled patients to potentially eligible and not enrolled patients to assess the generalizability of CHSS studies.
authors.affiliation: Division of Cardiac Surgery, Department of Surgery, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
authors.forename: Jeffrey P
authors.initials: JP
authors.lastname: Jacobs
authors.forename: Sara K
authors.initials: SK
authors.lastname: Pasquali
authors.forename: Erle
authors.initials: E
authors.lastname: Austin
authors.forename: J William
authors.initials: JW
authors.lastname: Gaynor
authors.forename: Carl
authors.initials: C
authors.lastname: Backer
authors.forename: Jennifer C
authors.initials: JC
authors.lastname: Hirsch-Romano
authors.forename: William G
authors.initials: WG
authors.lastname: Williams
authors.forename: Christopher A
authors.initials: CA
authors.lastname: Caldarone
authors.forename: Brian W
authors.initials: BW
authors.lastname: McCrindle
authors.forename: Karen E
authors.initials: KE
authors.lastname: Graham
authors.forename: Rachel S
authors.initials: RS
authors.lastname: Dokholyan
authors.forename: Gregory J
authors.initials: GJ
authors.lastname: Shook
authors.forename: Jennifer
authors.initials: J
authors.lastname: Poteat
authors.forename: Maulik V
authors.initials: MV
authors.lastname: Baxi
authors.forename: Tara
authors.initials: T
authors.lastname: Karamlou
authors.forename: Eugene H
authors.initials: EH
authors.lastname: Blackstone
authors.forename: Constantine
authors.initials: C
authors.lastname: Mavroudis
authors.forename: John E
authors.initials: JE
authors.lastname: Mayer
authors.forename: Richard A
authors.initials: RA
authors.lastname: Jonas
authors.forename: Marshall L
authors.initials: ML
authors.lastname: Jacobs
mesh_terms: D006348:Cardiac Surgical Procedures / Q000706:statistics & numerical data; D003625:Data Collection / Q000379:methods; D019992:Databases as Topic / Q000458:organization & administration*; D006330:Heart Defects, Congenital / Q000145:classification / Q000601:surgery; D006801:Humans; D017063:Outcome Assessment, Health Care; D016730:Program Development; D012680:Sensitivity and Specificity; D012955:Societies, Medical; D009626:Terminology as Topic; D013903:Thoracic Surgery
keywords: congenital heart disease (CHD); congenital heart surgery; database (all types); morbidity); outcomes (includes mortality